Thriving amid the hustle and bustle of city life with two careers and a busy social calendar, a woman in her 30s hears the most unexpected news while stopping at a doctor’s office on her way to a birthday celebration
Alexis Kidd was diagnosed with peritoneal mesothelioma following gallbladder surgery in 2007 at age 37.
With her husband by her side, the past 17 years of Alexis’s life have included an unbreakable once-in-a-lifetime romance, inspirational connections with friends who have become family, life-extending but excruciating medical procedures, and 10 cats who share in her love and happiness.
Alexis wanted to share her firsthand account of surviving mesothelioma with Mesothelioma Hope. Her story is an honest look at the life of a young woman whose world was forever altered by an extremely rare illness that she never saw coming.
A Disruptive Mesothelioma Diagnosis
In my life before mesothelioma, I was an active thirtysomething living my best life in the heart of Houston. 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.
On the day of my diagnosis, I was completely bewildered. It’s a lot easier to put that day into perspective now, but for a long time it was so confusing how things unfolded.
I had assumed it was going to be a routine follow-up visit after an emergency gallbladder surgery, so I asked my then-boyfriend and now-husband Christian to come with me. The appointment was just before we were going out to dinner to celebrate his birthday. I had no idea what I was walking into.
I was told that during my gallbladder surgery, a tissue sample had been scraped from my diaphragm. When the hospital pathologist came back with a diagnosis of cancer, no one could believe it, so they sent the sample to MD Anderson Cancer Center for a second opinion before they had even told me anything.
They confirmed that I did have mesothelioma.
In the Dark About Asbestos Exposure
As my doctor continued explaining my diagnosis, he told me this rare cancer is caused by asbestos. But when he started asking me questions about how I might have been exposed, and I couldn’t answer them, he began to get angry. I couldn’t understand why he was mad.
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 will always be grateful that he was observant enough to find my cancer in the first place, I knew that I wouldn’t continue to see him for further treatment because of his anger. I needed a doctor who understood empathy and delivered medical information with compassion.
Christian and I waited, hand in hand, in the doctor’s office for referral paperwork to MD Anderson Cancer Center.
Read more about Alexis and other patients and their loved ones in our Free Survivors Guide.
Navigating Fear After a Mesothelioma Diagnosis
After that appointment, Christian and I carried on. His birthday dinner went very well and was 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 new territory for us.
All the information on the prognosis for mesothelioma out there was so grim. I was devastated. And putting on a mask while interacting with other people was excruciating. I couldn’t tell anyone anything for a while because I simply didn’t 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 had with his mother. But lucky for me, he was absolutely determined to stay.
It was incredibly hard because there wasn’t 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 after I told them about my diagnosis.
The Not-So-Fun Cancer Conversations
When we did tell people about my cancer, some conversations were more difficult than others. Any long-term illness, particularly cancer, makes people, even those who mean well, 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.
Mesothelioma Treatment: Glimmers of Hope Amid Difficulties
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 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 areas in my abdomen that were 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.
Why Choosing the Right Specialist Is Crucial
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 more needs to be done to treat the patient holistically.
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.
Finding a mesothelioma specialist who hears and sees you is so important, so you can get the care you deserve and need.
Read more about how mesothelioma specialists helped other patients achieve survival in our Free Survivors Guide.
From Survivor’s Guilt to Second Chances
I have survived mesothelioma for nearly 17 years now. 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. This is why I believe that working with a therapist and finding support resources is so helpful.
Sometimes, I am overwhelmed with survivor’s guilt. 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.
My Inspiration to Keep Fighting Mesothelioma
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 also hold onto the little joys and fun things in our lives. 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 knew 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.
Mesothelioma Hope: Helping People Fight This Rare Cancer
The whole Mesothelioma Hope team thanks Alexis for her candor and willingness to share her powerful story of survival.
Thanks to treatment advances, stories of hope and survival are becoming more common. You can read other firsthand accounts in our Free Mesothelioma Survivors Guide.
If you or someone you love has been diagnosed with this cancer, our Patient Advocates are ready to assist you. We can help connect you with medical care and financial assistance — call (866) 608-8933 now to get started.
