By Marty Griffin & Kristine Sorensen Griffin • Photos from Chris Shipley, John Unrue Photogoraphy
MARTY – THE LOW POINT
2 A.M., WEDNESDAY, OCTOBER 3, 2018
I’m walking down the hallway to use the bathroom in our home. I stumble twice against the wall. I get into the bathroom and nearly knock down two pictures that my father painted while I’m trying to use the bathroom. It’s a bit shocking how my body is trying to deal with the chemo drug I just got, but I figured I would tough it out.
5 HOURS LATER
I start feeling a fever and call the radio station to tell them I can’t work.
1:15 P.M. – SAME DAY
I’m at UPMC Shadyside for my daily radiation treatment. I could not walk into the building. I literally lean on two amazing women – my wifeand volunteer greeter, Denise Daugherty, who walk me into the building. I’m starting to get a little concerned.
5 P.M. – SAME DAY
My temperature spiked to 103.7 degrees. My blood pressure drops to 70 over 50. My pulse races at 130 beats a minute. The doctors at Hillman Cancer Center, where I’m getting treatment, are rushing me in a stretcher to the ER back at the hospital. This is the worst day of the journey I’ve been on.
2 DAYS LATER
Sitting here in the Intensive Care Unit at UPMC Shadyside, I can’t believe what’s happened in the last 3 days. The tumor is half gone. That’swhat I hold on to. My treatment is half over. My last day of radiation – October 29th. Into the room comes Denise and blesses my wife and me with holy oil. This is where the magnificence of this journey comes into focus and this mythical belief that, somehow, I’ve been picked to make a difference. Somehow, I’ve been chosen because I can reach thousands of people who urgently need to know that the cancer I have is now preventable. The HPV vaccine is there for everyone. But before that mission began, with tears rolling down my face, I asked my wife, Kristine, if it would be OK if we go public with our journey so that, together, we can spread the word about this vaccine that can prevent the cancer I have and many more cancers. I knew that with my talk show on KDKA-AM radio from 9 a.m. to noon and the new company I started, Sparkt, and the website we’re launching in November, Sparkt.com, we could touch lives. I started Sparkt to make a difference; to make a change; to empower people to make change in their communities. We’re telling stories that motivate people to take action. Who would have thought our first mission would be so personal?
KRISTINE – SHOCK AND ACCEPTANCE
I never swear, but the first few days after Marty was diagnosed with cancer, I whispered a few F-bombs to myself. Is this really happening? How is it possible that my husband, who is healthy and works out like a maniac, has cancer? I plan to spend the rest of my life with him — my best friend, the love of my life; the man who makes me laugh, feel special and appreciate life. I can’t imagine a future without him.
And how do I protect our kids, who are 8, 11, and 13, from the fear that comes with this scary diagnosis? I never expected that at this age, I would have to tell them their Dad has cancer.
It all started when Marty felt a lump on his neck before summer vacation. He didn’t tell us until we returned home, and within three days, it was diagnosed as cancer from HPV. Scans revealed two tumors — the one he felt was in the base of his tongue and spread to a lymph node and a separate tumor on his tonsil. In just a few days, we were meeting with a team of doctors. I took pages of notes, trying to keep it all straight, trying to absorb everything they were telling us, trusting his life in their hands.
The piece of information I clung to — 90-95% of people who have this type of cancer, and in an early stage like Marty’s, survive with treatment. The other piece I couldn’t get out of my head — 50% of people need a feeding tube during treatment because it becomes so difficult to eat from the mouth sores and loss of taste.
Marty told me he wanted to share his story to encourage everyone to get their children vaccinated. As a more private person, I was reluctant, but knowing it would help him get through the journey, I agreed, and it was the best thing I ever did. It took the focus away from the fear of what would happen, the pain from the treatment, the self-pity than can creep in, and it switched my view to helping others, something that became real within days of going public.
So I put on my make-up, hoping the red splotches from my tears would disappear before I went on the air to anchor the 5 p.m. news on KDKA-TV, and I went to work. We continued life as normal as possible, explaining to our kids that Dad has cancer, but thankfully, it’s very treatable. And my busy life just got a lot busier, adding doctor’s appointments to my day that was already filled with getting breakfast and lunch and dinner on the table; soccer and field hockey and show rehearsals; and reporting and anchoring the news.
MARTY – TREATMENT
WEDNESDAY, AUG. 8, 2018
I start treatment. My team of doctors from UPMC are rock stars — the best in their field. They made a plan of action, and I’m doing whatever they say. Dr. Bob Ferris, who’s the director of UPMC Hillman Cancer Center and an immunologist and a head and neck oncology surgeon, performed surgery using a high-tech robot to remove the cancer tumor in my tonsil.
The recovery from that, alone, was a rough journey — on pain meds for days, couldn’t eat because of the pain in my throat, and almost no sense of taste. I lost 20 pounds in 10 days.
MONDAY, AUG. 27, 2018
I begin immunotherapy, the same day the kids begin school. I learned immunotherapy is the most promising treatment for many cancers. I’m in a trial or Nivolumab… only a couple people know if I’m getting the drug or a placebo, but I think I’m getting the drug since I feel fatigue after my first dose. I’ll have 6 treatments over 6 months.
Dr. Dan Zamberg, director of head and neck and thyroid cancers at Hillman, tells me immunotherapy is the latest treatment developed over the last 3 years to treat head and neck cancer. What’s incredible is that it helps the body use its own immune system to fight the cancer.
7:15 A.M. TUESDAY, SEPT. 11, 2018
Radiation begins. A special mask was made that fits my head exactly. I lie down on a table and the mask is literally strapped down over my face. It helps keep my head and shoulders still and guides the high-powered X-rays directly to the tumor in my neck. After the first few times, I fall asleep… just 10 minutes, but I need it.
Five days a week for 7 weeks, I drive to Shadyside from Green Tree after I finish my talk show on KDKA-AM. Crazy – it’s the same hospital where I was a regular as a kid when I got all kinds of injuries playing football and being a boy.
Dr. David Clump is my radiation doc. He warns me about losing weight and the challenges ahead from the sores that will develop in my mouth and throat. He wants me to get through this with as little pain as possible… so do I.
8:30 A.M. SAME DAY
Chemo starts. It’s the first of three chemotherapy treatments at UPMC Hillman Cancer Center. The doctors say it will make the radiation more effective. It’s hours and hours of time hooked up to an IV — fluids, then chemo, then more fluids and anti-nausea medicine.
All day, nurses, doctors, nutritionists come in to help, to care, to nurture. They’re amazing.
7 P.M. SAME DAY
I’m the last patient at Hillman. Kristine and I leave, exhausted, but glad the first big day of treatment is behind us.
KRISTINE – THE POINT
I knew I had to be the rock. As a wife and mom, I want to be the person my family can count on. But this time, I really had to lean on my faith and family and friends to figure out how I was going to do that. I drove to the Cemetery of the Alleghenies and knelt at the gravesite for Marty’s Mom and Dad, Rose and Marty, who both died in the last two years. Kneeling on the wet grass, reaching to lean on their tombstone, I felt it: “We will get through this together”. It’s the mantra I would repeat over and over, anytime I felt afraid.
What I found was that by sharing our story, every day became an inspiration as much as it was about trying to help and support the man I love get through cancer treatment. I never could have anticipated the reaction — the people who, every day, stop me on the street or send me an email to say they’re getting their children vaccinated against HPV when they weren’t going to before hearing Marty’s story.
I am blessed to have a platform and am grateful to be able to help others, through my reporting for Kidsburgh.org on KDKA and now through this effort to help prevent others from getting the cancer Marty has or any cancer from HPV.
That’s the point— a vaccine can now prevent this cancer. In women, HPV can develop into cervical cancer. In men, HPV can trigger oral, throat and other cancers. Women are fortunate to have the Pap smear to detect cervical cancer, but for men, there is no test for the cancers caused by HPV. In fact, 33,000 people every year are diagnosed with cancers related to HPV, and the number of men with HPV cancers is rapidly growing.
I never knew until Marty got this cancer that without the vaccine, “nearly all sexually-active people will get human papilloma virus (HPV) at some time in their life,” according to the CDC website. Yet, “most people with HPV never develop symptoms or health problems,” the website notes. Parents don’t realize how common HPV is because they don’t even know they probably had HPV themselves.
The vaccine to prevent HPV, Gardisil, came out in 2006, yet less than half of the kids who can get it are fully vaccinated.
It’s up to parents to make sure their children get the HPV vaccine that can prevent cancer. I can tell you, it’s hard enough telling your children their Dad has cancer. Imagine that your own child has cancer from a disease that you could have prevented by getting them vaccinated.
MARTY – TAKE ACTION
11 A.M., FRIDAY, OCT. 5, 2018
It turns out my mythical belief that I was destined to help other people wasn’t mythical at all.
Just this morning, another person told me he’s having his 4 kids vaccinated when he had no interest before hearing my story. It brought tears to my eyes.
That note, and hundreds of others like it, make everything worthwhile — from the tremendous fear to the agonizing pain, from crapping my pants to passing out at home alone.
Talk to your doctor. Talk to your children’s pediatrician. Take action. That’s how we spark real change in cancer rates from HPV. Don’t let the “antivaxers” confuse you with incorrect information.
Go to Sparkt.com where we have accurate information about HPV, the cancers it can cause and the vaccine that can prevent them. You can make a difference too — so you and your children don’t get cancer. That’s a powerful choice.
By Chris Shipley, Head of Marketing, Sparkt
Tired of the “car-into house” stories that report catastrophic news and leave viewers feeling helpless to do anything about it, Marty Griffin set out to create a new kind of media company, one that empowers people to create real and lasting change in their communities.
Based on the idea that we live and work best when we are deeply connected to the people who live and work around us, Sparkt is set to open its web and mobile app in November. The site features stories that connect people to their communities and inspire them to do good works.
Marty had no idea when he started the company that he would be the site’s first major story. Diagnosed with an HPV-related cancer, he realized that by telling the story of his diagnosis and treatment, he could influence parents to seek more information about the HPV vaccine and, ultimately, protect their kids from a range of cancers.
Since Sparkt broke the Marty’s Journey story in September, more than 2.2 million people have seen the message of courage and hope.
And Sparkt is just getting started. From organizing neighborhood cleanups to fixing roofs to shoveling sidewalks and more, Sparkt will connect site visitors with the tools they need to promote and take action in their communities. Volunteering to tutor kids, donating a few dollars, signing a petition, even just learning more about an issue is a huge step in the direction of good.
Visit Sparkt.com to experience the power of good stories to inspire good deeds.
DR. FERRIS Q&A
Dr. Robert Ferris is the director of UPMC Hillman Cancer Center, a head & neck oncology surgeon and an immunologist. He is one of a team of physicians who are currently treating Marty Griffin for throat cancer, caused by the HPV virus. We talked to Dr. Ferris about Marty’s treatment and the HPV virus.
WHAT IS HPV?
HPV is the Human Papilloma virus and is one of seven known viruses in the world that have been identified as causing cancer. There are more than 100 different types of HPV and about 30 types can affect the genitals with some types that lead to cervical cancer as well as cancers of the head & neck, called oropharyngeal cancer. In many cases, HPV causes no symptoms. Signs of infection can appear weeks, months, or even years after the person has been infected with the virus.
HOW DOES SOMEONE GET HPV CANCER?
About 20 million Americans are currently infected with HPV and about 6 million more get infected each year. It’s a common virus and can be present for years without causing any symptoms at all. Interestingly, some HPV infections can go away on their own, but those that don’t go away, often lead to cancer. We don’t know why some HPV infections cause cancer in some people and then not in others. We do know that it’s transmitted through skin to skin contact with someone who has an HPV infection and usually through normal sexual contact. We also know that all cases of cervical cancer are derived from HPV, while about 70 percent of oropharynx cancer is caused by HPV.
WHAT IS THE HPV VACCINE AND WHO SHOULD GET IT?
The U.S. Food and Drug Administration (FDA) just last month included new recommendations for those who should receive the HPV vaccine. Previously, it was only approved for boys and girls between the ages of 9 and 12 and for those up to age 26. Now, due to the proven effectiveness of the vaccine, the FDA is recommending that men and women ages 27 to 45 also be vaccinated. It’s important to understand that the vaccine does not prevent cancer, but it does prevent the HPV infection which leads to cancer. Years of scientific research have shown there are no serious side effects in the thousands of people who have received it. Unfortunately, many continue to spread misleading information about this vaccine causing many parents to question or choose not to have their children vaccinated. I am often asked if my children are vaccinated. Yes, absolutely because I am confident that the vaccine will save them from the risks of getting HPV related cancers later in their lifetimes. The vaccines have proven to be most effective if administered before a person becomes sexually active, which is why they are recommended for children, who are already receiving a series of vaccines through routine well visits. Those parents who choose not to give their children the HPV vaccine are putting their children at a much higher risk for developing cervical or oropharynx cancer when they become adults.
WHAT IS THE TREATMENT FOR HPV CANCER?
Nearly all cases of HPV infection can be cleared by the body’s own immune system. But those that don’t go away on their own, can then lead to cancer years later. Different types of HPV might cause different types of cancer, which are treated differently. When HPV develops into cancer, the standard treatment is surgery sometimes followed by radiation and chemotherapy. Other times, chemo and radiation alone may be appropriate. An experienced, multi-disciplinary team of oncology specialists is necessary to make specific treatment decisions for each patient. The treatment typically lasts for several weeks and often produce additional side effects while the therapies work to stop the cancer cells from multiplying and growing.
HOW IS MARTY GRIFFIN BEING TREATED?
HPV and HPV-positive cancers have a better chance of survival than those not caused by the HPV virus. His treatment has included surgery to remove the cancerous tumor from his tonsil, three rounds of chemotherapy and 35 daily rounds of radiation therapy. We also have Marty on a clinical trial for an FDA approved immunotherapy, which is usually not used until this cancer has returned. By using the immunotherapy earlier, as a first line treatment, we hope to reduce the percentage of people in whom the cancer returns.
I would also like to commend Marty for taking his cancer journey public and showing the public what happens during HPV cancer treatment. He has been outspoken on the vaccine that has been developed, tested and approved to stop this virus from causing cancer. I, too, hope that his story will make an impact on some who may not realize how this vaccine, administered to our children today, will help to ensure they don’t develop HPV cancer later in their lifetime as adults.
LOW LEVEL LASER THERAPY
Light therapy has been around for thousands of years and today it’s used to treat several medical conditions including seasonal affective disorder, psoriasis, acne and neonatal jaundice.
At UPMC Hillman Cancer Center, light therapy is being used to reduce or eliminate a serious side effect of cancer treatment called oral mucositis which can be caused by certain cancer drugs or from radiation therapy to the head and neck area.
Mucositis happens when the cells and tissues of the out if they are ‘good’ normal cells or ‘bad’ cancer cells. As a result, the lining of the mouth becomes irritated and painful ulcers form, most often on the tongue, inside cheeks, lips and in the back of the mouth. While the ulcers almost always heal by themselves, during the several weeks of cancer treatment they have a significant effect on a person’s ability to eat and swallow.
UPMC Hillman Cancer Center now offers cancer patients who are susceptible to oral mucositis low level laser therapy (LLLT) treatments before the condition has a chance to form.
LLLT involves the use of a handheld infrared laser and is given by trained nursing professionals several times a week. An external light probe, which is not hot or painful, is placed along the outer areas of the mouth and a smaller light probe is used to pinpoint areas inside the mouth. This is a quick procedure and depending on the number of sites to be treated, it takes just 10-15 minutes per treatment.
LLLT works by increasing the energy of cells to lower the harmful molecules that cause damage to healthy tissues.
A huge breakthrough in preventing these cancers from HPV was just announced October 5th. The FDA approved the HPV vaccine for people ages 26 to 45. This means that not only kids and young adults, but also millions more people can now get vaccinated to hopefully prevent these cancers, even if they already have some of the strains of HPV.