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My faith is bigger than my fear; living with mesothelioma — Part 1: diagnosis

My name is Rebecca Matthias, and I’m 39 years old. Six years ago, I thought I had a bladder infection. I went in to see a nurse practitioner associated with my primary physician. A bladder infection was ruled out and she proceeded to do a quick exam. She told me she wanted to order a CT scan of my abdomen and chest. At the time, it seemed odd to me. She explained that she thought perhaps a uterine fibroid was pressing on my bladder, although she was not confident in her response.

So, I went to have the CT scan at the hospital a few days later. After the scan, I was told not to leave and  to have a seat in the waiting area instead. Finally, they got my doctor on the phone to deliver the news: my right lung and abdomen were filled with fluid. He didn’t know why but theorized perhaps I had a ruptured cyst. It didn’t seem like a satisfactory explanation to me, but I really didn’t know what else to say or ask. He wanted me to see a surgeon as soon as possible.

It took one long week before I could see a surgeon. Thankfully, my mom was able to accompany me to the appointment.  After an exam and some blood work, the surgeon told me he suspected I had ovarian cancer. What?? Ovarian cancer??

And just like that, I began my journey with cancer.

The surgeon, Dr. K, wanted the fluid drained from my lung by a process called a thoracentesis. He was able to get that done that same day. Wow, that was painful! Since that time, I’ve had numerous thoracentesis procedures done, and it is never fun. I remember the pulmonologist looking at the fluid that came out of my lung and saying it looked cancerous to him. What he didn’t realize is that I hadn’t even come close to registering the reality that I had cancer. I remember leaving the room, finding a chair and just collapsing in tears.

Dr. K gave me no answers but did want me to see a surgical oncologist. About a week after first seeing Dr. K, I went to see Dr. J. He, too, thought it was ovarian cancer, but he was less certain. He wanted to do a laparoscopic procedure where he would remove my right ovary, as it was covered in what appeared to be a tumor. He would also do a biopsy and drain the fluid from my abdomen and pelvis.

A couple weeks later, right before Thanksgiving 2011, I had surgery with Dr. J in Milwaukee, WI (about an hour from my home). The surgery was supposed to take a couple of hours and appeared to be relatively simple. Instead, the surgery took six hours and required a larger incision than anticipated. Right there, on the operating table, Dr. J quickly ruled out ovarian cancer based on what he saw, but he regardless removed my right ovary and fallopian tube. He thought the unusual looking nodules and cyst-like formations throughout my pelvis and abdomen were benign, but he admitted he had never seen anything like them. How comforting for an experienced and well-respected surgeon and oncologist to tell you he found something in you that he had never seen before!

After a couple weeks of recovery, I decided to follow up with my local OB-GYN. Dr. J’s office hadn’t received any pathology results up until that point, although they assured me they didn’t feel I had to worry. It was Wednesday, November 29th that I went to see my gynecologist. That day is now etched forever in my memory. I wanted to discuss any complications that might arise from having one ovary and to just update her on what had taken place. I remember the nurses being a little “off” with me. They appeared nervous or uncomfortable with me and I remember thinking it was weird. When the doctor came in she did a quick history. I told her I was still waiting for the “all clear” from pathology. On that note, almost as an afterthought, she told me the results had come in. I had mesothelioma.

Read Part 2 here.

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