Jodi Page

An Unusual Diagnosis

Jodi Page’s diagnosis was especially uncommon even for a disease as rare as mesothelioma. She was an extremely unlikely target for a disease that usually affects elderly men.

Jodi was diagnosed at the age of 26, but she had a tenacity to survive that couldn’t be broken despite the hardships she faced down the road.

Jodi moved to Minnesota when she was 5 years old. She had a typical childhood growing up in Albertville, which was a small farm town. She’s also part of a big family – she’s the second eldest daughter out of eight children, three girls and five boys. Her parents also adopted her cousin when they moved to Minnesota, adding another member to the family.

Jodi credits her family as an invaluable support for her mesothelioma survival and getting through the emotional trauma of receiving her diagnosis. She also credits her doctors and the treatment she received for surviving her original prognosis by more than 20 years.

Getting the Diagnosis

Jodi battled depression and anxiety in her early twenties, but 1999 marked a turning point for her emotionally – she was finally getting her life under control. She was a part-time driving instructor and was ready to take the next big steps in her life. She had a friend who had recently moved into the city and was looking for a roommate, so Jodi took the offer.

“It was in the spring of 1999 that I decided to move into an apartment in Minneapolis,” she explains. “I got along well with the roommates, we did a lot of activities and things together. I felt like my life was heading in the direction that I wanted it to.”

Shortly thereafter, Jodi had lost her job teaching kids how to drive because of a back injury, but she didn’t let it hold her back. She quickly got another job and her future was looking bright.

Doctors Suspect Pneumonia

Later that year, in October, Jodi went to the emergency room because she was experiencing weakness, fever and trouble breathing. The doctors told her she had pneumonia. All of her symptoms were identical to those of a person with pneumonia, but unfortunately, they were also the same symptoms of something much worse.

“After I had completed the antibiotics, I was feeling better, but a couple of weeks later I got sick again,” said Jodi. Her symptoms had come back, this time with chest pains. “This time I went to my primary care physician, and he said I had pneumonia again.”

The condition that Jodi’s doctors had pegged as pneumonia was actually pleural mesothelioma.

Jodi’s improper diagnosis doesn’t discredit her doctors — it only serves to illustrate the aggravating difficulty of diagnosing mesothelioma. This is especially true for general physicians, and even more so when a patient, like Jodi, doesn’t fit the typical profile for that disease.

The Power of Second Opinions

“The oncologist did say that if I wanted a second opinion, he would approve of me getting one,” Jodi said. “He said I just had to tell him where I wanted to go for a second opinion if that’s what I wanted to do. And to check with my insurance to see where we wanted to go. I went down to Rochester, Minn., to the Mayo Clinic.”

Jodi’s general oncologist did something many oncologists may not do – he put a second opinion on the table. It was February, four months after Jodi’s doctors told her she had pneumonia, when she decided to get a second opinion at the Mayo Clinic cancer center.

Mesothelioma patients should always consider seeking a second opinion and absolutely always see a mesothelioma specialist. Jodi’s initial oncologist was not a specialist, so she made a decision that would ultimately lead to her beating her original prognosis by more than 20 years and counting. This is one of the greatest ways Jodi took her medical care into her own hands.

Offering some words of wisdom that ring true for every newly diagnosed mesothelioma patient, Jodi said, “It was smart to get a second opinion. I’ve learned that doctors don’t know everything, contrary to popular belief. You don’t have to stay with a doctor that you don’t like. That’s why there’s so many doctors out there.”

Stage of mesothelioma is important to survival chances, prognosis and treatment options. Jodi’s first general oncologist told her she had either stage 3 mesothelioma or stage 4 mesothelioma.

However, the specialists at the Mayo Clinic restaged her mesothelioma at stage 2 and told her she was eligible for surgery. They could now perform an extrapleural pneumonectomy (EPP) to remove the cancer by taking out the entire affected lung. She was given time to think it over, but it didn’t take Jodi long to figure out what she wanted to do.

“I called them back and said, ‘Let’s do this.’”

Jodi’s Treatment Plan

Jodi’s doctors took an aggressive treatment approach with her because she was young and healthy enough to weather them. Youth is an advantage with mesothelioma because young people are typically healthy; however, older patients who are also healthy stand to benefit from treatment the way Jodi did. Additionally, age doesn’t equate to invincibility, as Jodi can testify – she still had her fair shares of struggles with her treatment.

Extrapleural pneumonectomy surgery was the foundation of Jodi’s treatment plan. She had her lung, lymph nodes and diaphragm removed along with all the cancer the surgeons could find. The rest of her treatments included chemotherapy and radiation to kill any cancer cells missed by surgery and prevent tumors from growing back. But first, Jodi had to recover from her surgery.

EPP Recovery

Jodi spent a week in the hospital after her EPP for mesothelioma. The recovery period is nearly as important as the surgery itself because a full recovery ensures the surgery works.

Jodi’s recovery wasn’t easy. As she recounts, “They would try to get me up to walk around, and I would take 10 steps and think I was going to die because I couldn’t breathe. The simplest things were hard, I couldn’t stand because my body wasn’t strong enough to support me standing up. I had to sit down in the shower.”

After an EPP surgery, patients are required to start walking as soon as possible along with doing breathing exercises to keep their remaining lung clear and healthy. The physical therapy process also keeps the body strong to fight potential infections and speed the healing process.

“It was uncomfortable,” Jodi said. “It was an interesting week. I came home and started to recover there.”

Chemotherapy and Radiation

At the time of Jodi’s diagnosis, cisplatin, the standard chemotherapy for mesothelioma, hadn’t been approved yet. She had to opt for a clinical trial to get any kind of chemotherapy. She was supposed to get chemotherapy in the spring, but had to put it off until the summer due to injuries she sustained in a car accident.

“I did one round of chemo at the time, and I got violently sick off of the chemo treatment and ended up back in the hospital because of that,” said Jodi. “My oncologist decided that because it was in clinical trial phases, and because of my reaction to it, it would be beneficial for me not to do any more chemo treatments. We stopped chemo.”

Her experience with chemotherapy highlights an important part of clinical trials that all mesothelioma patients should be aware of: treatment can be stopped at any time.

Jodi’s doctors, however, still wanted to prevent her disease from spreading. They wanted to prolong the success of surgery as long as possible. Jodi began radiation therapy in August of 2000 to accomplish that. She had radiation twice a day for three weeks.

Accepting Help is Essential

When Jodi was diagnosed with mesothelioma, Minnesota congressman Bruce Vento was also battling the disease. She said that having mesothelioma was a little easier to deal with knowing there was someone else with the disease, a sentiment that is easy to relate to. Unfortunately, Vento passed away shortly after Jodi completed her radiation treatments, and it was hard on her.

“He was the only person I knew who had the cancer,” she remembers. “He was in the news. I was like, Okay, I’m doing the same thing that he’s doing. And when I heard the news, I was like, Okay, I’m going to die too. He was my one lifeline. When he passed, I felt isolated and alone. I didn’t know if I was going to make it.”

Jodi’s family, however, helped ease her concerns. The reason support groups are so successful is because they help calm the feelings Jodi experienced when Vento passed, those feelings of isolation that are felt by many patients with rare diseases.

Yet, Jodi explains her family was essential to her keeping things under control. For example, when she heard the news of Congressman Vento, she had her father to fall back on. She explains, “My dad said, ‘Jodi, you’re not him. You don’t know what’s going to happen.’ My dad helped me get through it, he was really supportive.”

She also remembers her aunt and siblings were also there for her when she needed them. Jodi’s aunt flew in from Utah to take care of her when her father fell ill, and her sister also took time to visit and inspire Jodi to change her diet.

Keeping Your Chin Up

If there is one thing Jodi teaches us from her life, it is that no matter what faces us, we have to keep pushing forward. She has become an example not just for mesothelioma patients, but for anyone coping with a cancer diagnosis.

Jodi was brave enough to share her battles with depression and anxiety, which had the unexpected results of reframing her life to appreciate the little things.

One of the fundamental aspects of surviving mesothelioma that resonate with each story is the importance of attitude. Every survivor’s story is different, but having a positive mindset is a seemingly unalterable constant. Jodi is no different, and for her, celebrating every achievement she makes, no matter how minor, makes all the difference.

Jodi has come a long way since her diagnosis. She has had courageous and inspiring celebrations like sky-diving on her 30th birthday a few short years after her diagnosis and treatment. She also celebrated her 40th birthday and 20-year survival milestone since her diagnosis in 1999. Jodi has also celebrated the recovery process from her EPP allowing her to stand in the shower again. Small things like that can be extremely gratifying.

“It’s good if you celebrate the milestones,” said Jodi.

“Something little that gives you a sense of accomplishment. Riding the bike around the block, celebrate that. Getting through your chemo, radiation, being alive a year after it, celebrate that.”