Fighting Cancer

We need to push to fund more cancer research


Chances are, if you’re reading this, cancer has somehow affected your life. Maybe you know someone who has cancer, or has had cancer. Maybe you lost a loved one to cancer. Maybe you are a cancer survivor, or are fighting cancer right now. Whatever your story is, I am sorry. I know of the heartache and the pain that you feel when you first hear that you, or a loved one, has cancer. I know of the sadness that weighs down your heart when you realize that they will — literally — be in the fight of their life.

Whatever your story is, you have my sincerest empathy. But if you’re like me, empathy is not what you want. If you’re like me, you just want a cure.

There are at least 75 different types of cancer, some much more rare than others. Some have high cure rates, and some…are not so high.

Actually, if you’ve had cancer, you can never say that you are fully “cured”. You can say that you have “no evidence of disease” (or NED). You hope and pray to be NED for the rest of your long, long, life.

My brother was diagnosed with a rare pediatric cancer called Osteosarcoma more than a year ago. Osteosarcoma is a type of bone cancer, and it is considered rare enough when a child is diagnosed with it, but it’s extremely rare when an adult gets it. My brother was in his mid-forties when he came down with intense knee pain that just kept getting worse. Several months later, a lump above that same knee became visible. Scans showed a malignant tumor had been growing there, causing the pain. My brother is an athlete who was used to working out with sore joints and fatigued muscles. He considered it the price you pay to keep fit and continue on with the physical activities he loved. Mild knee pain was nothing unusual for him, and nothing that any of us was ever alarmed about — at least, not until it just kept getting worse. It was so painful that he could not go cycling — his sport of choice.

My brother was devastated. We were devastated with him. We were all helpless.

I still remember the day he told me of his diagnosis. It was right before the Thanksgiving holiday, and was most definitely not news to be thankful for. I was upset for my brother, knowing what he would have to go through over the next few months — brutal chemotherapy treatments, surgery to remove the tumor. But we were all looking forward, past all the treatment and surgery, with the hope — with the naive knowledge — that he was going to defeat this quickly and effectively. After all, it was just one tumor. It just had to come out in order for my brother to be cancer-free, and then he could go about his life and get back to training and cycling. It wasn’t going to come back because the chemo treatments would prevent that from happening. Right?

As I said, we were naive.

A year and a half later, my brother has now been through a total of 15 chemotherapy treatments (with six different drugs), and he has at least four more treatments to go. As expected, the chemo treatments have not been kind. I had always known that he would have a lot of nausea, and that he would feel weak. I knew all his hair would fall out and that he would be immunocompromised. I did not know about the mouth sores or ringing in the ears. I did not know that everything he would eat would taste disgusting and metallic. I did not know about the painful stomach cramps or the nerve pain. The nerve pain is the worst.

A year and a half later, the cancer has now invaded my brother’s body three times after the original tumor was removed. He has had more surgeries than I care to count or remember. He has had infection after infection and has been on antibiotics for months. He had his leg amputated.

My brother — the cyclist, the runner, the skier, the snowboarder — had his leg amputated to try to prevent the osteosarcoma from coming back. The doctor had told him that it was “his leg, or his life”.

My brother was devastated. We were devastated with him. We were all helpless.

This past year and a half, I have watched — utterly helpless — as the cancer and cancer treatment ravaged my brother’s body and wreaked havoc on his mental and emotional well-being. I have bawled. I have screamed. I have sunken in and out of depression (at one point, calling in sick from work because I did not feel like leaving my bed). I have prayed for a miracle. And I have also accused God of forgetting about us — and for punishing my brother for some incomprehensible reason, making him suffer like this. I have been so very angry. I have been so short-tempered with my husband and my daughter — and they have just taken it. It’s not fair to them, and they know it, but they just take it from me — because they understand — and because they are sad, too.

But no matter what I’ve been going through this past year and a half, I know that it does not compare to what my brother has been enduring. He endures and he fights because he does not want to leave his wife and daughter. He tries not to complain, but even he — the person with the highest pain threshold that I know of — reaches his breaking point at times. He has some good days, when he’s feeling strong and well enough to do more things. But he has many more bad days. And throughout all of this, he apologizes to us. He says that he’s sorry that he’s causing us so much stress and worry. He’s sorry that he has been the cause of our suffering. I tell him that he has nothing to apologize for. I tell him that we will be there with him, through it all.

Even though I still have the sorrow and anger simmering in the back of my head, I have learned that holding on to those emotions helps no one — least of all me, and definitely not my brother. If I cannot somehow learn to cope, I cannot help him fight, and I cannot be there for him, as I promised I would.

Last week, I went to an Osteosarcoma Conference where scientific and medical researchers, doctors, family members of osteosarcoma patients, and osteosarcoma survivors were in attendance. The conference brought together like-minded people, united in the goal of finding more effective treatments for osteosarcoma. I did not want to miss it. It was an opportunity for me to hear from doctors and researchers about the latest treatments for osteosarcoma, new clinical trials, and possible theories on which genetic abnormalities may cause osteosarcoma to surface. Getting more information could never be a bad thing when it comes to health-related issues. The conference was also an opportunity for me to meet other family members of osteosarcoma patients, giving me a bigger support network of people who knew exactly what we were going through.

What I learned was that there is still a lot we don’t know about this terrible disease, and that clinical trials were shut down, or cannot even get started, due to a lack of funding or government regulations. Drugs available in other countries are not yet approved for use in the U.S. Because osteosarcoma is so rare, most of the funding that comes from the federal government goes to researching other, more common, diseases.

But there are also promising theories on how to treat the most common genetic abnormalities seen in osteosarcoma. At the conference, researchers talked about discovering that a certain genetic abnormality can be seen in the vast majority of osteosarcoma patients. This is a tremendous breakthrough. It gives researchers and genetic scientists a way forward. They just need money to make their way forward.

But I want to be able to help more. I want to stop feeling utterly helpless.

Before I attended that conference, I didn’t know how else I could possibly help my brother. Since the beginning, I have researched conventional and unconventional treatments, trial drugs, and osteosarcoma experts in other parts of the country. But my brother was already being treated at one of the best cancer hospitals in the U.S. Anything I came up with, his doctor had already known about it.

I tried to help by doing errands for his family whenever I could. We brought food and visited when he was feeling up to having visitors. I listened whenever he wanted to talk about the unfairness of life, or how scared and worried he was, or how he wanted to live. I continued to pray, and have asked for many more prayer requests for my brother. He has told me that, knowing that people are praying for him and rooting for him, has helped.

But I want to be able to help more. I want to stop feeling utterly helpless.

After the conference, I realized that there is one avenue that I haven’t yet pursued: petitioning the government to fund more research and clinical trials for new osteosarcoma treatments. Who do we (patient advocates) need to talk to in order to push for more funding? The U.S. House and Senate Committees on Appropriations determine what funding requests Congress even gets to vote on. There is the NIH’s Cancer Moonshot initiative, started by former Vice President Joe Biden. How could I get involved?

At the conference, I heard from and met with several attendees— who took it upon themselves to do fundraising drives, perform their own research, make phone calls to the NIH and drug companies, and so on. They did not have a scientific or medical background, but they have not given up trying to help. Their commitment and resolve is inspirational.

My next steps will be to follow suit, and look into all this further. I don’t yet know what will be needed, but I need to try. My brother, and many others, are fighting for their lives right now.

It’s the least I can do to help them fight.

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