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You get that call you feared. You have cancer. Hours go by. You decide how you're going to tell your family. You research treatments and statistics. You start to wonder if you're going to die.
This was a reality for Frank Rivera.
In 2004 he started having breathing issues and couldn’t walk for any amount of time. He was also experiencing severe cough and pain in his lungs. After a biopsy showed lumps in his lungs his doctor would diagnose him with lung cancer.
Frank would later find out this was a misdiagnosis and would spend the next 4 years battling cancer he didn’t have, and enduring other medical complications due to the error.
"I received courses of chemotherapy and radiation. The treatments took their toll. At one point I weighed a mere 98 pounds." Frank said.
In April 2011 an oncologist surgeon at Stony Brook Cancer Center in New York State correctly diagnosed Frank with a disease called Sarcoidosis.
Throughout his life Frank has witnessed the toll medical issues can take on a family.
When Frank was in kindergarten he was diagnosed with Childhood Leukemia in which he missed half of kindergarten through half of fourth grade. He would also end up in foster care after his mother had major heart surgery, 1 of 8 heart procedures she would have in his youth. It took a year until she was medically cleared to take care of her children again, but it wasn't the last time Frank would spend time in foster care due to his mother's medical condition.
He knew he was in for a fight.
In 2009, Frank met his now wife Diana online and moved to New York to be with her. In 2010 he learned that Diana was pregnant. Their daughter, Isabella Joy Rivera was born prematurely in January 2011. She died after a five days.
"It broke our hearts to the core. That was the hardest thing I ever dealt with, more difficult, even than being sick." Frank said.
Frank said the difference between losing a loved one and watching someone you care about suffer, and being ill yourself, has to do with control. When he is sick, he feels that he has some control over the situation. But there is nothing worse than not being able to help a baby, your baby, born with no defenses. That is a feeling of total powerlessness, he said.
A few weeks after his daughter’s death Frank was back in the hospital for lower abdomen pain. After x-rays and CT scans the doctors found masses in my lungs again. This is when Frank would find out he has Sarcoidosis.
The cancer treatments on top of the new medication Frank was taking to treat Sarcoidosis left him in the hospital for 25 days in late 2011. He would have his gallbladder removed along with a foot of his colon.
In 2012 Frank had another surgery to remove his colostomy bag. A few months later his colon ruptured, and he ended up with sepsis. The doctors told Diana that he had a 33% chance to live. He was on life support for 3 days during which the doctors reconnected the colostomy bag. When Frank woke up with a smile, the doctors told him it was a miracle he was alive. He would later have surgery for incisional hernia making it six surgeries over three years.
Recognizing through his own fight that patients need to be diligent in their own care by keeping up to date with new medications, treatments, and research, Frank started Sarcoidosis of Long Island nonprofit.
“We fight for those who can’t fight for themselves.” Frank said.
Frank’s organization has had three Sarcoidosis 5k Fun Runs, a movie fund raiser, and a Friendly's Dinner fundraiser, 5 Sarcoidosis of Long Island Awareness Walk
"I want everyone to know that no matter how hard this disease has affected my life, I will keep a smile on my face. Even though I am on disability, I know that it may have changed my life, but it won’t run my life. I refuse to give in to this disease. There are days where I cry and ask, 'why me'. I just answer myself by saying God only gives you what you can handle."
Through his organization Frank has worked with the state of New York to get a resolution passed making April Sarcoidosis Awareness Month. He has received a letter from President Barack Obama for his hard work and dedication.
In 2016 he hosted the event A Day for Rare Diseases. The event featured speakers from all different aspects of the rare disease community including government officials.
In 2017 Frank was diagnosed with Parkinson’s Disease.
In December 2017 Frank was named People of the Year in the newspaper organization TBR News Media six newspapers one being The Village Beacon Record News.
In 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill. They did a whole segment on his struggles and strength dealing with these diseases.He said what defines him is his strength to carry on, and that Sarcoidosis is what he has not who he is.
“I was told many times I wasn’t going to make it, but here I am.”
Frank said he owes it all to his mom. Watching her endure all the medical procedures throughout her like taught him to always fight. She was sick for most of her life and fought for Frank and her family.
In March of 2020, Frank caught COVID. His fight was tough. There were days in which he called his doctors to see if he should go to the hospital. He was told that if he went to the hospital it would be a death sentence. There were many nights where his wife watched him sleep to make sure he was breathing. He still has long term effects from COVID.
In January 2021 he found out he has diabetes. He went to the doctor for dizziness, stomach problems, blurred vision and many more health issues. He had blood tests done and on January 4,2021, he received the call” You need to go to the hospital, your blood sugar is at 631, which is extremely high.” He went to the hospital and my blood sugar was at 890. The doctors told me you should be in a coma. He told them “You don’t know me very well.” Speaking about how he always has been different. He is now a diabetic due to multiple reasons one being the prednisone side effects.
Frank lives these fights every day.
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