I met Doreen Kossove through the leiomyosarcoma list on ACOR. For 8 years we were best friends, sharing everything every day when we were able to. There were many hilarious moments as well as sad ones…how to choose from 8 years of moments!

I visited her in South Africa before she moved back to the US for treatment. They drive on the left side of the road there, and deep ditches run alongside the roads to carry off heavy rain. Imagine Doreen driving at breakneck speed in a falling-apart sedan, lurching wildly from side to side, regardless of traffic and buses so overstuffed with Africans that arms and legs were sticking out the windows!

She lived life to the fullest whenever she could. The world is suddenly quiet now that she’s gone.

An Interview with Todd

How did you choose what to write about for the Moments in Sarcoma project?

Todd: Having battled this disease for five years now, there were plenty of moments I could have written about. A lot of very meaningful or moving moments, but when I thought back to right after I was diagnosed, other than the actual bad news, this was the moment that stood out. “Here Comes the Sun” has been a theme song and an inspiration in my continued fight and something I hadn’t told a lot of people about, so this seemed like a great way to really express how big of a moment it was to me. In fact, what I wasn’t able to tell in the story (given the word count constraint) is that after I left the clinic that day, the song came on again in the car on my way home and then later the next day. And it’s not as if this is a song that’s played a lot, so while it definitely seemed like the sign I was looking for at the time, “someone” made sure the message was reinforced a couple more times, just in case I missed it the first time.

You were told that you probably wouldn’t live 5 years when you were 26 years old. Most of us can’t imagine…what was that like?

Todd: Well, I wasn’t actually told that until it metastasized to my lungs in 2005. Originally, the doctor told me that in 65 to 70% of cases, osteosarcoma is curable if caught early enough. At the time they were hopeful mine was. When we asked what happened to the other 30-some percent, the doctor was honest with us and told us, “they die.” But I just always lumped myself into the “curable” group from the beginning and told myself and my family that I would beat it. And I believed it. I still do. So even when it came back in my lungs and the doctor gave me those horrible odds of survival, I was certainly scared but I wasn’t about to call it quits. The numbers by themselves can be scary, but like one of the doctors told me, I’m one person, not a percentage of a person so those numbers don’t mean much to me specifically. I figure given the incredibly slim odds of even getting this cancer in the first place (nothing about my osteosarcoma has ever been considered “typical”) I’ve already kind of “won the cancer lottery,” so why can’t I overcome the odds and keep on living? Possibly until they find a cure. I guess that’s always been my attitude.

What has helped you beat the odds?

Todd: I think aside from keeping a positive attitude, the support group I have around me in my wife and family and friends has been a huge source of strength to me. They keep me going. Even with cancer, I love my life and it’s because I get to spend it surrounded by incredibly wonderful and amazing people.

What are your hopes for the Team Sarcoma bike tour experience?

Todd: When I was a kid, I used to participate in bike tours with my dad and brother. But that was almost 20 years ago, so this is a terrific opportunity to do another one and get a chance to relive a little bit of my childhood. Aside from that, I’m also really interested to meet the other people on the tour because we already have a passion for curing sarcomas in common and I’m excited to find out what else we might have in common. It should be a blast!

Who will come with you, and how have are they significant in your life?

Todd: My wife and dad will be joining me. Obviously they are both incredibly important to me. Karen, my wife, has been by my side throughout my entire battle and provides me with more love and support than anyone – she’s absolutely amazing. My dad lives a few hours away, so I don’t see him as much as I might like, but like I said, we both have such fond memories of our past bike tours when I told him about this one his immediate response was “Where is it? I’ll be there.” This bike tour can’t help but make some great memories for all of us. I can’t wait.

Is it important to work to increase sarcoma research funding? If so, why?

Todd: Absolutely. There are no “insignificant” cancers – they all need to be researched and studied. But I think because sarcomas are less prevalent than other cancers, they tend to be under-funded and under-studied and that is really no excuse. The Team Sarcoma Initiative is helping fill a big need in raising money to study sarcomas and hopefully eliminate them once and for all.

An Interview with Karen, Todd’s wife

How would you describe Todd (in a few sentences)?

Karen: When I first met Todd 11 years ago while we were in college, I was attracted to him because he’s confident, smart and funny (not to mention handsome, of course). I truly think those same qualities are helping him now. He’s confident enough (and stubborn enough!) to believe he can overcome anything cancer throws at him, smart enough to understand the statistics mean nothing at this point, and funny enough to get both of us through the really tough parts. I think he’s uncomfortable when people describe him as “inspirational” — since he thinks he acts like anyone would in the same situation — but the way he has maintained such normalcy, kept his sense of humor, and overcome so many medical obstacles while fighting osteosarcoma inspires me and so many other people every day.

What do you think participating in the Team Sarcoma bike tour means to Todd?

Karen: It is an enormous honor — it’s all he’s been talking about! Obviously, he’s excited about bringing awareness to sarcoma, meeting other patients/supporters, and hopefully raising some money to aid the cause. But beyond that, this is a goal Todd set for himself and I think it will mean the world to him when he achieves it.

Before cancer, Todd loved playing sports and exercising, but cancer has taken much of that away from him. Between the allograph in his left arm, countless rounds of chemo, three lung surgeries, radiation, and a near-fatal heart failure episode, Todd has largely been forced to watch from the sidelines these past few years. The lowest point was in January 2008, when a massive pulmonary embolism left him dependent on an oxygen tank at the age of 30. Doctors told us that due to the scarring and limited function of his lungs, he might require oxygen permanently. But Todd didn’t accept this and to everyone’s surprise, 10 months later, the oxygen tank was removed from our home. The bike tour gives Todd something to work towards physically and mentally, and participating in this event after dealing with so many setbacks will be a real source of pride for him.

What do you hope the bike tour experience will be?

Karen: Both Todd’s dad (an avid biker) and I (a non-biker) are going to join Todd for the bike tour. I’m sure Todd’s dad is excited about the opportunity to be touring with Todd again, since the two of them used to do bike tours across Wisconsin many years ago. Plus, since they live 200 miles away, Todd and his dad don’t get to spend as much time together as they’d like. As for me, I’m excited to be there to support Todd, and seeing him achieve this goal is going to be very emotional. To see Todd participating in a bike tour after all he’s been through is really a miracle. This is just another example of how anything is possible. I’m so proud of him already! This is going to be an incredibly memorable experience for all three of us.

You have been Todd’s partner and caregiver throughout a five-year ordeal. Is there anything you would like to share with other spouses and caregivers who are facing what you’ve faced?

Karen: When your loved one is diagnosed with cancer, everything changes in an instant. One day, you’re living a normal life and then suddenly, you are thrown into a new world of chronic illness and uncertainty. From then on, your life revolves around cancer — monitoring symptoms, dealing with side effects, living in the hospital at times, waiting nervously for scan results — and you lose any sense of control you once thought you had over your future. You have to learn to “live one day at a time,” but that’s a lot easier said than done. Chronic stress becomes a way of life, and you will grieve over your lost sense of normalcy.

For me, the hardest part has been the unrelenting fear of losing Todd. Oddly, this fear usually hits me in between crises, when things probably appear “fine” to others. A couple years ago, I was struggling emotionally in such an unhealthy way that I had to seek help. And I am so glad I did! I hope other spouses/caregivers recognize that it’s okay to admit when they need help and will seek it out. It’s important to take care of your own emotional and physical well-being not only so you can continue to care for the patient, but also so you can make the most out of whatever time you have together.

Although this is a tough road, it hasn’t been all bad. Todd and I are more in love than ever. We have been surprised and humbled by the kindness and support we have received, not only from family and close friends, but coworkers and strangers too. We have drawn immeasurable strength from the notes people have left on our CaringBridge website during both good times and bad. I have found both medical information and friendship through an online support group devoted to osteosarcoma. Most importantly, we have learned to appreciate life in a unique way and to be grateful for every single day we get to spend together. My hope for other spouses/caregivers is that they can find their silver linings as well.

A Moment in Sarcoma from Todd

CT scans only take a few minutes. Except for the first one after you’ve been told you have cancer. It lasts for weeks.

Twenty-six years old. Married. College-educated. Gainfully employed. Fortunate to have a rather blessed life. And now faced with the uncertainty of how much longer that life would continue and how much “living” it would be able to do.

Scared. Sad. Frustrated. Questioning. Wanting something – anything – to lean on at that moment to know this can be overcome. That things will be okay.

I’m not – or should I say, “wasn’t” – a very spiritual or religious person. But moments like this in life give way to needing a “higher answer.”

With my heart racing and nerves on end, I continued to feign a smile and calmly chat with the CT tech, trying not to show the emotion that was just beneath the surface. I concentrated on not letting my voice crack. On keeping my breathing even. On holding back tears. And then I silently prayed.

To whoever would listen.

“Please send me a sign,” I started. “Any sign. Something to let me know that I will be all right. That I can beat this. That this can be overcome.”

“I NEED this. I need this sign.” For the first time since I lay down on the CT table, I became aware of the light sound of a radio playing in the “control area” in the adjacent room. It had been on the entire time, but it was just now that my ears tuned in. An unknown song faded out. A new one faded in.

“Here comes the sun. Do do do do. Here comes the sun. And I say, it’s all right.”

Goose bumps. A smile. And some soft tears.

Right then I knew. It would be all right.

An Interview with German

How has having cancer as a teenager influenced who you are today?

German: It was very difficult to live with. You really don’t know what to do. I personally think it helped me to mature and grow, to see life from another point of view and to appreciate the moments I am presented with in life.

I am writing to you from the United States. Do you think having sarcoma in Mexico is different than it is in the United States?

German: I believe that cancer is the same anywhere in the world, attacking us all. The difference is that not all countries provide equal support – like research resources, medicines, and facilities.

In your “moment” you wrote about finishing up treatment and moving on with your life, but having ongoing problems with your leg for ten years. What was that like for you?

German: It was a painful process for ten years, and the decision to amputate the leg freed me. I am in better health without suffering, and I can do more independent living…playing sports and playing in a band.

You participated in the 2008 Team Sarcoma run in Mexico City, and we have a picture of you crossing the finish line. Nineteen hundred people participated in that event; what was that experience like?

German: Well, it was my first 5km race, and it was a great experience!!! I felt comfortable and complete to have run to help a foundation supporting children with cancer (We Will Never Give Up Foundation) and researching treatments for cancer. I’m trying to involve more people who will be run in support, so that we can provide better quality of life for people with cancer and motivate them to go forward and never give up.

What are your hopes for the  Team Sarcoma bike tour?

German: First, it will be a new experience for me, traveling and seeing new places, knowing that people in this tour are people who are cancer survivors or are in treatment. And it will be good knowing that we have moved forward and we have not surrendered, and to share our experiences with each other.

Is it important to work to increase sarcoma research funding?

German: Whether it’s important to do is a personal decision. In this life you don’t know what’s going to happen in the future. Some people are living with cancer right now. You never know… someone who has been healthy all his life can become a cancer patient.

Cancer doesn’t know economic status, religion, nationality, age or gender, so we all run the same risk, but what we can do is move forward and pass this message to everyone and encourage them. Cancer doesn’t mean death…. cancer is part of life. It helps us to mature and see life in a different way and makes us better people.

German’s Band, Televisor

An Interview with German’s Brother, Adrian

How would you describe German?

Adrian: German is a guy who never gives up despite all the obstacles the life has. He is someone who always smiles at life and strives for his dreams no matter what it takes or how hard life can be. He is very friendly; wherever he goes he always makes friends.

What has German taught you?

Adrian: German has taught me to always keep fighting no matter how hard or how big a problem is, to always give my best in each situation and to be optimistic even when problems seem to be impossible. My brother survived cancer even when doctors told him that it was almost impossible. He taught me that no challenge is bigger than I am.

A Moment in Sarcoma from German

Hello my name is German De la Rosa. I am 26 years old, and I live in Mexico City.

I am a cancer survivor, an osteosarcoma survivor to be exact. It happened when I was 14 years old (in 1996) when I got hit on the knee while playing basketball. It happened really fast. We thought that the hit had swollen the knee, but it gradually kept growing, becoming red and hot. After 6 months I went to the National Institute of Pediatrics, where I received help quickly and was informed that I had cancer. The tumor was osteosarcoma (bone cancer). I was treated with chemotherapy. The tumor was removed from my knee, and I got an internal prosthesis in order to save my leg. Throughout the 10 years I had 2 more prostheses, but every day the bone was becoming weaker. I just had to try to be “complete.”

In 2005 I had an accident and fractured the bone. It wasn’t in a good condition, and on January 30, 2006, I decided to amputate the leg and no longer be suffering from extreme pain. I started using an external prosthesis, a “C” leg, which I still have, and I am still learning to walk properly.

Currently I have a normal life, I’m an audio engineer, music producer, bassist and vocalist of my band, Televisor. I’m helping people who suffer through similar situations as a volunteer in the foundation “Aqui nadie se rinde.” I like to say to all patients: Never give up, strive to fulfill your dreams. Cancer isn’t a disease; it is a lesson of life. A disabled person isn’t someone who doesn’t have a part of his body, a disabled person is someone who refuses to see and accept the reality in which we live.

German’s moment in Spanish

Hola mi nombre es Germán de la Rosa, tengo 26 años y vivo en México Distrito Federal.

Soy un sobreviviente del cáncer, de un osteosarcoma para ser exacto, esto paso cuando tenia 14 años (en 1996) y todo a raíz de un golpe en la rodilla jugando basketball. Todo paso realmente rápido, pensamos que por el golpe se me había hinchado la rodilla pero poco a poco fue creciendo, poniéndose rojo y caliente, después de 6 meses fui al Instituto Nacional de Pediatría, donde recibí ayuda de inmediato y me dijeron que es el cáncer.

El tumor fue cáncer, osteosarcoma (cáncer en el hueso) me trataron con quimioterapias, me quitaron el tumor de la rodilla y me pusieron una prótesis interna para salvar mi pierna, pasaron 10 años y 2 prótesis más, pero cada día el hueso se iba debilitando y todo por tratar de estar “completo”.

En el 2005 me fracture el hueso, como ya no estaba en buenas condiciones, decidí amputarme la pierna y dejar de sufrir por dolores muy fuertes (el 30 de enero del 2006). Empecé a usar una prótesis externa, una C Leg, que aun tengo y sigo aprendiendo a usarla correctamente.

• You can also read the press release in Spanish.