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Dealing with “Scanxiety” at My Annual Mesothelioma Checkup

Mesothelioma survivor Heather Von St. James at her annual checkup with Dr. Sugarbaker

No matter how good I feel on a day-to-day basis, every six months, the reality of being a long-term cancer survivor comes crashing back. Even though I’m going to be celebrating 11 years since my diagnosis on November 21, I still get uneasy when the time comes around for me to get on a plane, head to Houston for my scans and to see Dr. Sugarbaker.

My “scanxiety” is nothing like it used to be. I used to get so nervous in the days and week leading up to my appointments, I found it difficult to not have anxiety attacks. As the years have gone by, then nervousness has subsided, and my thought process is different. I have been around the meso community long enough and know that at any time the cancer could come creeping back, but that is why I continue to see my specialist every six months, to stay on top of things.

Helping Others Instead of Thinking About Myself

I have always said that the best way to get out of my own head is to help others. I have taken that to heart on my visits to see Dr. Sugarbaker. He knows he can depend on me to talk to newly diagnosed patients every time I’m there. He knows that they need to see someone who has been through what they have and has come out the other side.

Heather and Dr. Sugarbaker

I love helping with new patient orientation and just talking with the patients. I’ve had lovely surprises the last few times I’ve gone. I’ve had people approach me in the waiting area, telling me they have read my blog, or heard about the advocacy work I’ve been doing. It’s always humbling to me, when people seek me out. I’m just like them. I went to Dr. Sugarbaker seeking help, and for me, it worked, he saved my life. Giving back, and helping him out is the least I can do.

I’m still getting used to going to Houston. This was my fourth visit there, and I’ve been going for two years now. I’m getting to know the staff in the office much better and love hanging out joking around and talking with them. The staff is passionate about their patients and taking excellent care of them. I love that I’m treated like one of the team. It certainly takes the stress level of the appointment way down.

Another Year All Clear

I’m happy to say my scans came out clear, and there is still no evidence of disease, so I have another six-month reprieve. I get asked often why I don’t stretch it out to a year between appointments, after all, I’m almost 11 years out. But I go by what the good doctor tells me to do.

He told me last time, he needs to see me as probably more than I need to see him. I imagine, in his practice, there are many cases that don’t have a good outcome. I know I’m the exception, not the rule. The stark reality is that many people don’t do well with the treatment or aren’t candidates for surgery. I know the doctors at the Baylor Mesothelioma Center do everything they can for their patients, and that is one of the many reasons I keep going back.

Every trip there, I try to meet friends who happen to live in the area and this trip was no different. This time, the friend also happens to be a patient of Dr. Sugarbaker’s who I’d been texting and talking with since shortly after her diagnosis. earlier this year. Kerri and I, along with another meso patient, Anna Marie, happen to form a little support group of our own, checking in on each other and making sure everyone is okay.

Heather and Kerri

Being able to finally met Kerri and go out for a celebratory dinner was the perfect ending to a whirlwind trip. This trip to Houston was also the last leg of my travels cross-country over the last two months. After all, it’s the meso community that gives me strength. Each and every person I’ve had the good fortune to get to know has left a huge imprint on my heart. One would think that I would run out of room, but every time I meet someone new, my heart grows.

As I lay in bed that night, reflecting on not only the weekend, but everything that brought me here, I realized I’ve outlived my original prognosis. The doctors told me I would be lucky to get to 10 years, and here I am at 11. Tears welled up in my eyes at the thought of all the amazing people I’ve known, and those I’ve lost, and I thanked God for bringing me this far.

One thing I know for sure, I still have more work to do. Asbestos is still legal, mesothelioma is still a relatively unknown cancer, and funding for research is far short of what it needs to be. The other thing I realized is that people still need hope, and I know I can provide that.

So bring on the next 11 years, and the next 11 after that, because one thing is for certain: My story of hope is far from over. I’m just getting started.