In Sickness and in Health

I was an active thirtysomething living my best life in the heart of Houston, Texas. I rocked an office job on weekdays and worked at a local boutique on weekends.

I had a busy and fulfilling social life that involved sharing Wednesday night dinners with friends, enjoying live music, going to art shows, and playing video games with my roommate. The guy I was crazy about, whom I eventually married, was a musician in a band, and we both rode our scooters together everywhere.

Putting that day into perspective is so much easier now than it was at first. I was completely bewildered for a long time about why things unfolded that way.

This doctor’s display of anger was during my second post-surgery visit after he removed my gallbladder following an emergency trip to the hospital. Up to that point, he had said nothing to me of his suspicions of mesothelioma.

Since I had assumed this was going to be a routine follow-up visit, I had asked my then-boyfriend and now-husband Christian to come with me because we were going out to dinner to celebrate his birthday immediately after the appointment. I had no idea what I was walking into.

The diagnosis was so unbelievable that it took my breath away. I was told that during my gallbladder surgery, a tissue sample had been scraped from my diaphragm. When the hospital pathologist came back with cancer, no one could not believe it.

My second opinion came before I even knew about it — they sent the sample on to MD Anderson Cancer Center for confirmation that I did, in fact, have mesothelioma.

The doctor explained that this rare cancer is caused by asbestos. But when he started asking me questions about how I might have been exposed, I was completely confused. I could not understand why he was becoming angry.

Looking back on it, I realize he was searching for an explanation. From his perspective, here was this young woman with a rare form of cancer in an extremely unusual area of her body, so there has to be a reason — and surely she must know why.

“I still do not know how or when I was exposed to asbestos — and my doctor simply was not satisfied with that answer.”

While I am and always will be grateful that he was observant enough to find my cancer in the first place, I am also thankful that I did not have to continue seeing him for further treatment.

“I needed a doctor who understood empathy and delivered medical information with compassion.”

I put on as brave a face as I could while Christian and I waited in the doctor’s office for referral paperwork to MD Anderson Cancer Center. I was shaking the entire time as we sat, hand in hand.

Fortunately, Christian’s birthday dinner went very well and served as a lovely distraction for a while. But when it was time to go to bed, I stayed awake for hours, looking up everything I could find on the internet about mesothelioma. That was a huge rookie mistake. But it’s also human nature to try to understand what we are dealing with when it is brand new territory for us.

All the information out there was so grim. I was devastated. And putting on a mask while interacting with other people the next day was excruciating. I could not tell anyone anything for a while because I simply did not know what was going to happen.

Christian was also devastated by the news, but he never doubted that I was going to get through it. He was not going to let me travel down this path alone. I tried to break up with him three times so that he would not have to watch me experience a long illness, as he did with his mother. But lucky for me, he was absolutely determined to stay.

Christian and I did not tell anyone for a long while. It took us quite some time to find a doctor who would even try to help me, much less come up with a plan on how to do it. But I did tell my boss at the time because I would have to take time off from work for scans. My closest friends were next to hear about the news.

It was incredibly hard because there was not a lot of hope to be had at the time. The statistics were grim, and the first oncologist I met with admitted he did not know how to help me.

We did not share the news widely until the surgery and treatment plans were in place. There were lots of tears and fears, along with an overwhelming amount of love and support. The biggest gift from this experience was — and still is — the deeper connections I gained with those who were truly my family of friends.

My surgical team did everything in their power to help me. They researched. They talked to doctors from other hospitals all over the country. My oncologist worked alongside Dr. Paul Sugarbaker to learn how to do the hyperthermic intraperitoneal chemotherapy (HIPEC) procedure. It was inspiring how hard they worked to save my life.

Unfortunately, there were a lot of complications after the surgery. My body swelled because of third spacing, which is when fluid from the blood vessels shifts into the nonfunctional spaces between cells.

Some of the area on my abdomen that was recovering from surgery opened back up and refused to properly heal. I would get so sick from chemotherapy, and within two days of being in the hospital for treatment I would be right back there for another week.

The physical pain was unbearable, even with medication. And heaven help me if a member of the hospital staff did not know how to use my chest port and tried to get an IV in my arm instead. That was an entirely different nightmare. My veins would roll like crazy, and my arms ended up being full of holes and bruises to match.

But the nurses at the hospital were always so kind to me. Regardless of what was happening, no matter how often I was there, they were all angels in scrubs.

I do not know if this applies to other people who have been fortunate enough to exceed survival expectations, but my experience has shown me that there needs to be more done in a holistic way for the patient.

“Mesothelioma patients should be treated through a less dismissive and more holistic approach.”

For example, after the initial surgery, I expressed concern about how my body had changed due to scar tissue buildup and nerve damage. I was told that most surgeons do not consider that to be an issue because the survival rate is low and most patients are elderly, so they do not care about how their bodies look.

I had a lot of complications from surgery and treatment, and I struggled for a long time with how to move forward with my new, fragile body. I still deal with pain and body dysmorphia daily.

Since mesothelioma has no cure, I fear I will have to deal with it again someday. It does not necessarily keep me from living my life, but the thoughts are still floating through my mind. And I believe this is where working with a therapist would be helpful.

For the first five or six years after treatment, it was absolutely gut-wrenching for me when someone would pass away from cancer — even if it was someone I did not know. The ache is less these days, but it still hurts.

Of course, I want to live my best life during this absolutely amazing second chance that I have been given. But in this particular area, I have trouble following my own advice: Mine is not to understand. Mine is to accept.

I will probably always have a hard time understanding why I am still here when so many others, especially those who have children or parents who need them, are gone. My heart hurts for those they leave behind, and I cannot make anyone’s pain go away. All I can do is attempt to create something good with my existence. And if I can help give even one person a small bit of hope, then this life of mine is worth something.

I think the hardest part is that people mean well. Of course they do. Their hearts are always in the right place. But any long-term illness, particularly cancer, makes people uncomfortable. They do not know what to say or do. They want to make you feel like they understand what you are feeling.

“The truth is that the only people who genuinely understand what you are going through are those who have experienced it themselves.”

The most challenging experience for Christian and me has been talking to people who want to see a happy ending to this disease. They want the comfort of knowing that the cancer is completely gone and will never return so that they can stop worrying.

Unfortunately, that is not always the case with any cancer — much less mesothelioma. During these conversations, we just smile and let them know how things are going right now. Because tomorrow, things can change.

My number one source of inspiration is my husband. The relationships I have developed over the years have also inspired me, from friends who were there for me throughout my journey to those whom I have met along the way.

“The mesothelioma community has afforded me an incredible opportunity to meet others who have either been diagnosed with this same type of cancer or who have a family member battling this illness. It is such a gift to be even a small part of their corner of the world.”

I have recently cultivated official cat lady status. We have eight indoor cats and two outdoor cats, and just about all the neighborhood felines come to visit us. It might seem a little chaotic, but we love every single one of them.

A lady I know from my time working at the boutique was diagnosed with colon cancer. She was kind enough to share her journey with me.

At one point, she told me that she was inspired by how I seemed to handle things with such grace during my own journey. And because of how she saw me, she knew that she could get through her trials with grace as well.

When I tried to explain to her that I had very human moments of overwhelming pain, illness, fear, and despair, she took my hands and smiled at me. She said that she would see me struggle sometimes, but overall, I would continue to shine my light from within onto others and never truly falter.

Because of my example, she felt that she could do the same. And she did. She is still a star in the everyday world, and I am grateful to know her. That is one of the most incredible things anyone has ever said to me.