Giving Tuesday Now

Giving Tuesday Now

 

#GivingTuesday is a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. At a time when we are all experiencing the COVID-19 pandemic in our own ways, generosity is what brings people together. Generosity gives everyone the power to make a positive change in the lives of others and is a fundamental value anyone can act on. Whether that means giving time, money, kindness, love, positivity, or a helping hand, your generosity plays a part in keeping us all together.

Join the #GivingTuesday movement today and together we can demonstrate how each act of generosity counts, and that it means even more when we give together.

 

INTERVIEW:  Alison Olig, Sarcoma Alliance Executive Director

INTERVIEW: Alison Olig, Sarcoma Alliance Executive Director

Alison Olig, Executive Director

Last week, Sarcoma Alliance announced that Alison Olig has been selected as our new Executive Director (ED). In preparing the questions for this first interview with Ali, I thought it would be interesting to start with the same first question I asked of retiring ED, Arthur Beckert . . . .
How much did you know about sarcoma before you started your work with Sarcoma Alliance?
Prior to volunteering with Sarcoma Alliance, most of my sarcoma knowledge came from personal experience. At the age of thirteen, I was diagnosed with alveolar rhabdomyosarcoma. My treatment included eleven rounds of chemotherapy, five surgeries, and radiation. I am happy to share that I have been cancer-free since the end of treatment.
Through my experience with sarcoma, I developed a deep understanding of the physical, mental, and social ramifications of the disease and its treatment, both to patients and caregivers. By volunteering with the Alliance I gained a much broader understanding of sarcoma, the more than fifty subtypes, its treatments, and the various needs of those affected by connective tissue cancers.
How does being a sarcoma patient make you uniquely qualified to be the Executive Director of Sarcoma Alliance?
Two main reasons come to mind:
The first is mentioned above, in that I have a genuine clear understanding of what someone goes through as a sarcoma patient. I know what it feels like to sit in a doctor’s office and be told that I have cancer, to deal with side effects that sometimes seem as challenging as the cancer itself, and to watch the toll it takes on those I love.
The second is that I can state, without a doubt, that I am completely and utterly committed to the work of Sarcoma Alliance. I am passionate, dedicated, and will put everything I have into furthering our mission. 
This is not, not will it ever be “just a job.”
Can you tell us more about your professional background?
From high school on I hoped to eventually have a career in nonprofit management. In furtherance of that goal I obtained a B.S. in Finance, followed by a J.D. Throughout this time I was also very involved with various nonprofits, gaining valuable experience along the way. 
After graduating from law school, I worked as an attorney and then in regulatory compliance, all while staying committed to developing my nonprofit skill set. I volunteered for Sarcoma Alliance for several years, specifically as a Board Member for the past three years and as a member of the  Executive Committee for a majority of that time.
How will Sarcoma Alliance stay the same under your direction? What changes are you looking forward to? What are the priorities for the Alliance?
Our retiring ED, Arthur Beckert, has accomplished much in support of our mission to provide guidance, education, and support for everyone affected by sarcoma. I hope to continue, and grow upon, this work as well as his commitment to honoring the legacy of our founder, Suzanne Leider. This work will include efforts toward current programs like our Assistance Fund providing grants for second opinion consultations, our Peer-to-Peer Network, and our Facebook Support Group. It will also include new endeavors, such as expanding our working relationship with social workers and increasing sarcoma awareness among general practitioners.
The biggest challenge at Sarcoma Alliance has been obtaining the funding necessary to grow programs. I will work with our Board to generate new sources of funding – and to assist those who wish to fundraise on our behalf – to ensure continued support of the sarcoma community.
Finally, what do you want us to know about you?
How incredibly honored, humbled, and excited I am to have this opportunity. 
But for a little about myself – I am married to an amazing man, and together we love spending time with our six-month old son, two dogs, and two cats. They keep me laughing and on my toes, and I wouldn’t have it any other way!
To learn more about Sarcoma Alliance and our mission to support those affected by sarcoma, please visit our website.
Giving Tuesday

Giving Tuesday

 

#GivingTuesday is a global day of giving that harnesses the collective power of individuals, communities, and organizations to encourage philanthropy and to celebrate generosity worldwide. Following Thanksgiving and the widely recognized shopping events Black Friday and Cyber Monday, this year’s #GivingTuesday will take place on December 1st and will kick off the giving season by inspiring people to collaborate and give back.

Join the #GivingTuesday movement today and together we can demonstrate how each act of generosity counts, and that it means even more when we give together.

 

PATIENT STORY:  Brianne Simpson

PATIENT STORY: Brianne Simpson

Brianne Simpson

Another addition to our series of interviews with those affected by sarcoma. You can read all of the stories here.

I remember my first introduction to Brianne. It was a picture of her leg. Nice to meet you, Brianne.  (She’d included the picture of her leg with one of her very first Facebook posts.)

That was months ago and I’ve since learned that my first impressions were correct – she is strong, proud, and going places. I’ve also learned that there is so much more to Brianne. She cares deeply for others, she is open, she is vulnerable.

This is Brianne’s story . . . 


How old are you?

I’m 19 and will be 20 in January.
Where do you live?
Ottawa, Illinois. I live at home with my mom, dad, little sister, and three dogs.
Tell us a little about yourself.
I’m not married and I don’t have kids – well, unless you count my puppy. I have three dogs, two boys and one girl. I love them to death!
I’m a full-time student at the local community college. I’m majoring in Early Childhood Education with Special Education and Clinical Psychology.
What is your sarcoma diagnosis?
Synovial sarcoma in my right knee.
In what year were you first diagnosed?
I was diagnosed on December 20, 2012.
Have you had surgery, chemotherapy, radiation treatments, something else?
I had surgery to remove my cancer and then I underwent 33 radiation treatments.
What is your prognosis?
It’s good. They were able to remove all visible signs of the cancer from my knee when I had surgery. The radiation I had after was to make sure everything bad stayed away. As for right now, I’m in remission, and I’m thankful for that every day.

“You can’t give up hope when you’re fighting against something like this.”

What is your biggest piece of advice for someone who is newly diagnosed with sarcoma?
Wow . . . that’s a loaded question. I’d have to say the best pieces of advice I have is to always have faith. You can’t give up hope when you’re fighting against something like this.
There are going to be days when you feel miserable, but if you can keep your hope and faith, and put yourself into a good mood, it will make things easier and help you get through it.
And another thing . . . don’t be afraid to ask for help. The people who love you want to be there for you.
How are you feeling today?
I’m feeling pretty good today. I finished my treatments in April, and I’ve been recovering since then.
My leg has healed. The mental part of things is what I have the most trouble with lately. I’ve had a few scares while I’ve been in remission, but things have come out clear for me so far.
Tell us your diagnosis story.
My story started a few years before I found out about the cancer. I fell a few times between 2009-2012. I went to the doctor and they all told me I’d be fine. I used crutches and went to physical therapy like they told me, but my leg never got completely better.
So, finally, in 2012, my family and I started pushing the issue. We went to a knee specialist near our town and they told me I was fine and that things were in my head and told me to take ibuprofen. I did what they said for a while before going back and telling them it wasn’t any better.
They finally ordered an MRI and then things really took off.
I had 4-5 MRIs in a week and was then sent to an orthopedic oncologist specialist seventy-five miles away in Chicago. At that time, they still didn’t think I had cancer. I had a few appointments with the specialist and a biopsy was scheduled.  The biopsy was a failed attempt because even after they numbed my leg, I could feel everything they were doing.
The decision was made to remove the mass. I had surgery on December 20, 2012, and that was the day I found out I had cancer. My oncologist/surgeon came in and explained that it was a cancer called synovial sarcoma.
I don’t think I realized what that meant at the time. After the doctor left the room, I asked my mom, “Does that mean I have cancer?”
I remember looking around at the family that had come with me to the hospital – my mom, dad, and two of my aunts. I could tell they had all been crying, and that scared me because I’d rarely seen them cry.
I remember thinking that I didn’t want to lose my hair. And then I remember thinking that I didn’t want to die. I was too young and had too many plans.
I was scared. Terrified. But I tried not to let it show. I wanted to be strong for my family. I wanted to be strong for myself.


Brianne (R) with her younger sister
“We never talked about the worst-case thing that could happen with her around”

What about your sister?
She was 11 at the time of my diagnosis. It’s hard to tell what she really thought about it. I’m not sure she fully understood. We didn’t lie to her – my parents explained to her that I was sick and that it was serious. I think we all sheltered her from it as much as possible because it scared her. We never talked about the worst-case thing that could happen with her around.
She was always trying to help me when I couldn’t do something for myself. She’d make me laugh by doing something dorky.
I feel guilty because I was getting so much attention from everyone and she wasn’t getting as much as she used to. She’s the baby of the family.
She never once complained about the lack of attention. Not even when I had to miss her first basketball game for an appointment. She said it didn’t matter and there would be other games.
My sister is a trooper. She’s a good kid, and I love her so much. I never forget to hug and kiss her goodnight anymore.


“I had to face reality; I was a cancer patient.”
Tell us about the radiation treatments.
Radiation is when things got real for me. Up until that point, I could pretend that I didn’t have cancer. After I started radiation treatments I had to face reality, I was a cancer patient.
I went to radiation five days a week for 6.5 weeks. My days got to be pretty routine: get up, head to radiation, go home, get ready and go to school, go to work, and then pass out from exhaustion. There were times that I couldn’t go to work and some days I would miss school and sleep all day.  Radiation sucked.
I met some amazing people at radiation. There was an older couple there every day at the same time I was there. They call me their adopted granddaughter now and I love them.
What side effects of treatment have you had?
I was exhausted. I hated to get out of bed most days, and I missed so much school. I was in my first year of college and I was lucky that my teachers were as understanding as they were.
My leg burned something fierce because of the radiation. The treatments split my freshly healed surgical scar open and burned the heck out of my leg. The pictures my mom took to document everything are gruesome.

“I fought for my life and won.”
You have scars. Tell us your philosophy about them?
Ahh. My scars. I love my scar. It isn’t something I’m ashamed of. It’s big, and it’s ugly, yes. But it’s part of me and it tells a story.
I fought for my life and that scar is proof.
I don’t mind that people stare at it when I wear shorts. I like when people ask about it. I’d rather that they stare and then ask about it rather than stare and awkwardly look away when I catch them.
I get a lot of looks at school. I can feel when people’s eyes are on me, but I’ve gotten used to it and I’m not self-conscious of my scar like I thought I would be. It’s my battle wound.
I fought for my life and won. Why be ashamed of the evidence of that fight.
And what about your emotional scars? How are you doing?
The anxiety, depression, post-traumatic stress disorder (PTSD), that’s what’s been tricky for me. The PTSD isn’t something I’ve been diagnosed with. But to be honest, after cancer, I don’t think you need a psychologist to tell you that you have it. You just know you do.
I’ve considered seeing someone, but that kind of thing is expensive and I don’t have insurance. I’m don’t get nightmares, but I get the overwhelming emotions of fear and helplessness. It can get in the way of everyday things sometimes and it can change my attitude and point of view in a second.
It’s hard to deal with. But I have to. I won’t let it rule me.
I toughed it out by myself for awhile, but around the time of my scans, I get such bad anxiety, it’s not possible to hide. They know I get scared and stressed and anxious. I take anxiety medicine at night to help me sleep when I need it.
I think this kind of thing probably gets better with time. But for me, it’s all still fresh.
More recently, my other leg has begun to bother me, which causes all kinds of panic and anxiety. It’s hard to sort my emotions. I’m not sure how much of it is psychological.
Was (or is) your life on hold while you work through your illness?
My life was definitely on hold. But at the same time, I was always trying to push forward. I didn’t want my life to stop completely so I continued working throughout most of my treatments – only taking a leave of absence when I just couldn’t do it anymore.
I continued with school, too. Even though I missed a lot of classes, I pushed through and I’m proud of myself for that.
A lot of my emotional relationships went on hold, though. I was afraid to make new friends because quite a few of my old ones had stopped talking to me. They didn’t know what to do with me, or what to say, so they said nothing and disappeared.
It’s gotten easier to make friends. Though I still get that look when they find out I was sick.
What is the funniest/strangest question you’ve been asked about your illness?
People asked me a lot why I didn’t look sick. They assumed that because I hadn’t lost my hair, and because I looked healthy, that I wasn’t sick. They didn’t understand that just because I was trying to smile and be happy and positive, and because I looked healthy enough, that I was really sick and exhausted and had no energy for anything.
What is your hidden talent?
They call me the Child Whisperer. Haha. I’m really good with kids. I love working with them, and teaching them, and being around them. They’re so sweet and just perfect.

After we’d completed the interview, Brianne had an MRI to look at the trouble with her left leg. Here’s what she told me. “The MRI results came back, and it isn’t cancer. I have a torn meniscus in my other knee now . . . I’m just thankful it isn’t something more serious.”

Keep in mind that Brianne’s story is just that – her personal story. Nothing here is meant to be medical advice (see your own doctor for that) and the attorneys like me to remind you that her views are not necessarily those of Sarcoma Alliance.  (Though we do believe in being thankful for good test results.)

Researchers redefine sarcoma subtypes

Researchers redefine sarcoma subtypes

By Suzie Siegel

Advances in science and collaboration across medical disciplines are redefining sarcoma subtypes.

Dr. Brian Van Tine

“Nowhere is that more evident than at CTOS meetings,” said Brian Van Tine, MD, PhD, director of the sarcoma program at Barnes and Jewish Hospital at Washington University in St. Louis. “We are beginning to understand the complexity of sarcoma and how we will use this to design new therapies.”

Dr. Van Tine will discuss new targets for metabolic therapies Thursday at the annual meeting of the Connective Tissue Oncology Society in New York.

“In the future,” he said, “I believe we will not only use genomic information to subclassify sarcoma, but to also make treatment decisions based on the DNA sequence, the RNA expression, the activated proteins and the metabolites that are specific to an individual’s sarcoma. The work currently being done and presented at CTOS should soon have direct clinical application.”

“Clearly the field of oncology is moving towards personalizing therapies and identifying new targets,” said CTOS President Shreyaskumar R. Patel, MD, medical director of the sarcoma center at the M.D. Anderson Cancer Center in Houston.”This trend is also true for musculoskeletal tumors, although slower due to the rarity and complexity of these malignancies.”

The dictionary records the first use of the word “sarcoma” in 1804. In recent years, more than 50 subtypes have been identified, generally based on the normal cells they most resemble. For example, a leiomyoma (also called a fibroid) is a benign growth of smooth-muscle cells. A leiomyosarcoma is the malignant version.

Dr. Dei Tos

The World Health Organization classifies sarcomas. In 2002, for the first time, WHO used molecular genetics and immunohistochemical staining to refine its classifications, said Angelo Paolo Dei Tos, MD, who serves on the CTOS Board of Directors. He directs the department of oncology and anatomic pathology at the General Hospital of Treviso, Italy.

In January, WHO updated the 2002 categories. Dr. Dei Tos said he expects the next update in five or six years, as genetic aberrations are increasingly used to group tumors into categories.

This year, he said, WHO got rid of the subtypes “hemangiopericytoma” and “malignant fibrous histiocytoma,” commonly used in the 1980s and ’90s. The former was divided into benign tumors; solitary fibrous tumors, which can be benign or malignant; synovial sarcoma; and malignant peripheral nerve sheath tumor.

Malignant fibrous histiocytomas were divided into leiomyosarcomas, rhabdomyosarcomas, dedifferentiated liposarcomas, undifferentiated pleomorphic sarcomas as well as lymphomas, melanomas and sarcomatoid variations of carcinomas.

In 2002, for the first time, WHO used clinical data to better determine the malignant potential of tumors, Dr. Dei Tos said. They were divided into benign, intermediate malignancies and malignant. The recent report substitutes two new categories for the term “intermediate malignancy”:

  • locally aggressive tumors that don’t spread elsewhere, such as desmoid fibromatosis
  • lesions that rarely spread (or metastasize), such as plexiform fibrohistiocytic tumor.

A few new subtypes have been added, such as pseudomyogenic hemangioendothelioma, he said.

PATIENT STORY:  Liselle Reppert

PATIENT STORY: Liselle Reppert

Today, we begin a new feature – interviews with sarcoma patients, caretakers, family, and friends.

After talking the amazing Liselle Reppert into being our first interview, I closed my email with, “Let me know what you’re thinking.”

The first line of her two-part (!!) email back to me was, “What am I thinking? ‘Oh Boy’ and on so many levels.”

Let’s dive right in…


Liselle Reppert

What is your sarcoma diagnosis?
Undifferentiated Pleomorphic Leiomyosarcoma. There are characteristics of rhabdamyosarcoma that had them scratching their heads and may complicate my treatment later but for now we are going with leiomyo.

In what year were you first diagnosed?
My diagnosis started in May of 2013, but I found “Fred” in February of 2012. Yes. I sat on him for over a year and would most likely still be sitting on him if my friend Ashley hadn’t taken control.  
Have you had surgery, chemotherapy, radiation treatments, something else? 
So far I have had two surgeries. One to remove “Fred,” a 27cm incision to take out a 16x16x10cm section with clear margins. And another surgery to shoot blue dye into the lymph vessels when i stopped healing because edema kept re-opening my leg.   (Interesting stuff…made me pee like a Smurf.) 
And I found the Sarcoma Alliance while I was recovering with my wound-vac, which kept me in the hospital for 18 days.
I have only done one round of doxorubicin. 
Had you heard of sarcoma before you were diagnosed?
It was in college that I first heard of sarcoma and promptly forgot about it. Though I now recall every word of the brief lecture in my human anatomy classes.
“A lot can happen in 10 years
and I would like a chance to see it.”
 
What is your prognosis?
Since my last surgery I have had 3 CAT and 2 MRI scans. The plan was hunt, peck, and zap. Unfortunately, one lung met is inoperable and sitting in a nest that one-quarter of my blood volume passes through with every heartbeat. Now, we are looking to control its growth.
As I told my doctors, “A lot can happen in 10 years and I would like a chance to see it.” Regardless, whether surgery advances or a cure is found, I want to help those who come after me. 
As things stand…I’m terminal.
That is NOT to say that sarcoma is going to kill me because it is NOT. From the moment we are born…we begin to die. That is what defines life. It is the definitive that separates life from existence. 
I am living.
How old are you?
44
“My inability to work dragged my family all
the way to the gutter. We live in a motel.”
Where do you live?
Technically…I am homeless. My inability to work dragged my family all the way to the gutter.
We live in a motel. We could have moved out but God gave us the most incredible dog that can tell when i am going to fall. There are no apartments here that will accept a 95 pound dog without a service license and I have no way of getting him certified. We would rather live in a motel than risk losing my dog and the peace of mind he brings my family.
Tell us a little about you. Are you married, kids, pets? What do (or did) you do for a living?
I grew up in Long Beach, California; I live in Mount Vernon, Washington, with my husband, two grown sons, and my dog.
What is your biggest piece of advice for someone who is newly diagnosed with sarcoma?
My best piece of advice is be organized. NOTHING can prepare you for the chaos of hearing those three words from our nightmares. Getting organized gets your head back in the game.
Everyone has a diagnosis story. What is yours?
I’d lost some weight and the leftover skin flap shrank on one leg but not the other so I watched it. One day, I found a golf ball-sized sphere in the fat flap. 
“Oh great, a big cyst,” I hoped. That was in February of 2012. I checked it periodically and by September there was no doubt I had a tumor that more than likely wasn’t benign. Unfortunately, I had no insurance and having been disabled for the last eleven years and having landed in the gap between worker’s compensation, social security, disability, and welfare, I had no hope of getting help. 
I went to the emergency room expecting to have to file bankruptcy as soon as they told me what was going to kill me and kicked me to the curb, but that’s not what happened.  
Skagit Valley Hospital kept me and sent my labwork to California when the local lab couldn’t give a clear diagnosis. They also got me the best oncology team they had and stayed on top of on welfare until they agreed to pay my ongoing bills.
Tell us why you name your tumors?
That is comedy relief. At first, my husband couldn’t even tolerate the word “tumor,” forget about lieomyosarcoma. Big scary “cancer” just ticked him and oldest son right off. My youngest understood that I think out loud when I’m getting a handle on a situation.
I thought of naming it “Henry” and the mets would have been “Winkler” and “Ford.”
My mother-in-love named the mets saying they were in my chest so they had to be girls.  My Sarcoma Alliance friends named a lymphnode that turned traitor and my named the latest met.
I have some more that need names. Any ideas?
How are you feeling today?
Actually, I feel surprisingly good, not at all what I expected.
“The only side effect so far is my
hair loss and that is no biggy.”
What side effects of treatment are you experiencing?
Because of a pre-existing penchant for hyperemesis, we hit the antiemetics really hard.
The only side effect so far is my hair loss and that is no biggy.
What keeps you inspired / motivated?
How can I be so optimistic??? How can I not. From the get go, God has had His hand on this whole fiasco. 
Since you brought it up, how has your relationship with God been challenged throughout all of this?
My relationship with God is a little more blatant. He had always been obvious in my life, but I sometimes seemed to be sleeping on the job – letting Him appear to be taking a back burner in my active life.
When you were a kid, what did you want to be when you grew up?
As a child, I wanted to be a banker and after graduating from high school, I went into banking. Unfortunately, money weighs a ton and I injured my back forcing me to change careers. Several minor injuries later, two discs herniated leaving me partially paralyzed with chronic pain and facing full paralyzation. 
Sometimes God realizes you are stubborn and he pulls a pin to put on your brakes for you.
At one point, I studied to be a stenographer. I developed tendonitis. Rains…pours…I never understood what the lesson was. Still don’t get it. 😛 
I just know He has a point. Somewhere.

One thing to keep in mind with this and all of our interviews – these are the words and experiences of the person being interviewed. The attorneys would like me to remind you that the viewpoints expressed here do not necessarily represent those of Sarcoma Alliance and should not be taken as medical advice.