A wife, a daughter, a new mom, technology executive and serial entrepreneur, Paoola never imagined that she would have cancer. Although hearing the word’s “it’s cancer” stopped her in her tracks she didn’t let her disease stop her from helping others who face a cancer diagnosis.
Before my diagnosis, I was working for a technology company, putting in ridiculous hours climbing the corporate ladder. I was a real Type A, focused on my career and traveling all the time. I spent so much time on a plane going to different countries that there were times when I woke up and had to look at my phone to know where I was. There was one time when a gentleman in South Africa asked me, “Does your soul ever catch up with you?” At the time, I was in my early 30s and thought he was crazy. I just looked at him like I don’t know what you mean. I was having a fabulous time.
But now I get what he was talking about. I don’t think my soul had a chance to catch up with me until I had cancer and it mentally unraveled me. Cancer forces you to come to terms with who are you really and what you really want to do with your life.
My diagnosis was really a fluke. I happened to turn my head once while swallowing and had trouble. I thought that was interesting and a little odd, but didn’t think much of it. Then it happened again about two weeks later. I had an appointment with a doctor friend a short time after that—totally unrelated to my swallowing issue—but I mentioned it. He suggested I get an ultrasound, which I did New Year’s Eve 2014. I was the last appointment of the day and the technician and I were talking about being ready to celebrate.
But when the results came back, my doctor friend sent me to a colleague suggesting that I should have a biopsy. I think he knew it was cancer, but didn’t want to say. So, I scheduled an appointment with his colleague. At the time, I was living in Tampa and on the day of the visit, which happened to by my 41stbirthday, I had taken my mom and my one-and-a half year old son, to Disneyworld. We were just going to make a quick stop at the doctor’s office on the way home. So, there we were, sitting there in the doctor’s office, my mom beside me and Milo on my lap, when the doctor came. He didn’t even look up from the file he had in his hands, didn’t even make eye contact, he just opened the door and said, “Looks like this is cancer, kiddo.”
At first, it didn’t register—I was totally dumbfounded. He came in and sat down and launched into a whole big thing about the type of cancer and how he was planning to treat it. But I was just sitting there holding Milo thinking, “Oh my God, is this the kind of cancer you die from?” and wondering if I was going to be there for him as he grew up. I didn’t hear anything else the doctor said that day. My mom started crying and then my son started crying, so a couple of different nurses came to lead them out and settle them down, but I still couldn’t hear what the doctor was saying. It was like my brain had just shut down and all I heard was noise. I had to schedule a follow up appointment to try to make sense of it all.
We drove home in total silence. My mom was in the back seat with Milo, crying softly, but I need to process things on my own, so I was very calm and quiet, just taking it all in. When we got home, I took Milo to the park, which is what we would normally do at that time. Somehow, between the appointment and the drive, Mom had managed to tell my brother and my doctor friend, so I started getting calls. So many questions, but I didn’t know anything. I was very calm about it, which was surprising because I have had anxiety issues all my life and should have been freaking out. But I tried to keep things normal for my son. Only after I put him to bed, when I was by myself, did I allow myself to break down.
A Big Gulp
I am an information gatherer by nature, so of course, I googled my cancer, which I probably shouldn’t have done. I’m not sure I learned anything helpful. It just freaked me out more. The next day I felt a little numb, like I was just going through the motions, holding myself together. If somebody had poked me, I would have broken down, which was so unlike me. Normally, I would have said, “I got this. We can do this.” It took me a few weeks to process the news.
When I went back to the doctor, I learned that it was an aggressive form of papillary thyroid cancer and would require surgery to remove the thyroid, then radiation. And I would be on synthetic thyroid medication for the rest of my life.
I don’t know whether it was a good thing or a bad thing, but after that, I went back into my typical pattern figuring out the goal and the plan to get there. I kind of became a machine, just focused on getting stuff done. What I realized several years later, when I did unravel and I couldn’t control my anxiety anymore, was that I was so focused on doing what needed to be done that I wasn’t processing any of the emotions that I was feeling—the fear, the anxiety. It just wasn’t anything I was prepared to think about.
Complicated Game Plan
While I was still trying to figure all that out, literally in the same month, I got a second diagnosis. I had tumors in my ovaries that my doctor thought might be cancerous as well. In order to determine whether or not it was cancer and if so, what kind, it was going to require surgery to remove them and so the two oncologists had to coordinate to come up with a game plan. Eventually, they decided to do the thyroid surgery first, then the radiation, then after a few weeks to recover, they would do a total hysterectomy. My husband and I had moved to Turkey for work by that time, but we decided that I should be treated in Florida where I knew and trusted the doctors and my mom could help care of our son.
The thyroid surgery was ok, but the radiation was tough. I had to stay confined for seven days because of the radioactivity, which is really hard when you have a young child you want to hold and who doesn’t understand what’s going on. And when they finally did the hysterectomy, thankfully they discovered that the tumors weren’t cancerous. Unfortunately, I developed an infection from the surgery. I had to be treated with heavy duty antibiotics, extending my time in Florida to almost nine months. By that point, my husband was working in Russia, so I was very thankful to have my mom and my sister-in-law nearby to help me and Milo.
That was supposed to be it, but my blood tests never settled down the way they should have. I would come back to Florida every six months to get tested, but the various markers kept going up and down. Eventually they decided to take another look. When they did, they saw five tumors around my neck. The doctor was worried that it could end up in my lungs or my brain. So, about three years ago, they went back in for a much more invasive surgery. This time they removed the tumors and about 50 lymph nodes around my neck.
It was a lot more difficult to recover this time than after the first surgery. I was older and had already been through so much. I guess my body just needed more time. It took about a year for things to settle down, but for the last 12 months the tests have been looking good and my cancer markers have been trending down. It’s the first time in eight years that the numbers are consistently going down, so I feel a tremendous relief.
Finding the right doctors was hard. I went to three different oncologists before I found one that I felt understood the human aspect of cancer. You would think doctors would know how scary it is to hear you have cancer, but they don’t all get it. By the time I was learning about my recurrence, I was working with my third oncologist, and I had already kind of processed the immediate shock of a diagnosis. But his humanity in talking to me about it made a huge difference. If it took an hour, or if it took two hours, that’s how much time he spent. He would hold my hand or just sit with me in silence while I absorbed hard news and cried. That’s hard to find, and it made all the difference. I am so lucky to have found him.
In hindsight, not dealing with my emotions at the time of the diagnosis was a big mistake. I wish I had known what to expect. It would have been so helpful to have been told, “You’re going to want to find a therapist because going through this it’s going to make you feel like you’re out of control.” For somebody like me who is used to being in control that process is really hard. I got to a point where I couldn’t sleep at all—I couldn’t function. I actually thought I was going crazy because I felt like my mind was not responding to what I was asking it to do.
I am used to dealing with numbers and technical reports, but I couldn’t make sense of anything and was forgetting things and disorganized. People would look at me and think I was fine—I didn’t look sick—but my brain just wasn’t functioning the way it used to, and I didn’t feel like myself. I was making mistakes and sometimes didn’t even realize the mistakes. I had never experienced that in my life and it started affecting my confidence at work. And when I lost that confidence in myself, that’s when I unraveled. Who am I if I don’t have the believe in myself and what I can do?
When you’re going through something like this, you assume you are the only one, and you feel very much alone in your turmoil. I thought there was something wrong with me, that I was the only one struggling with all this, that everybody else is kind of figuring it out and, somehow, I’m not. But when you understand that it’s not just you, that it’s a collective experience, you feel less alone. Then its’s okay to say, let me just sit here for a minute and reset. I feel like we need the permission to say I need to stop for two seconds and breathe, or today I am not OK, or I’m struggling and don’t know how to get through this on my own.
Having hit bottom like that, I started therapy and neurofeedback, which was enlightening and so helpful. I have always dealt with a high level of stress in my life, and all the travel I used to do certainly added to it. But it wasn’t until I had brain scans done that I came to understand that the level of stress that I thought was normal was actually extraordinarily high—what someone in survival mode from a war or disaster would be experiencing. And when you add in the recognition that you have no control over your life, and the brain fog from radiation treatment, it’s no wonder I was a mess. It took a few years of working through all this to get back a sense of myself and remember what I can do.
I’ve spent a lot of time learning about how my brain works. I wanted to be able to manage it, even if I couldn’t master it. I got into meditation about two years ago and I’m finally feeling like I am learning how to process my emotions. Whether it’s writing in my journal or going for a walk or just learning to sit with the uneasiness, giving space for that ugly emotion to just exist, and then letting it go. Learning to be kind to myself and understanding that it’s OK to ask for help has been huge. But it’s an ongoing practice. It takes time every day.
It was really hard on my mom too. I didn’t realize until recently how much my diagnosis and her involvement affected her, and I don’t think she’s fully recovered emotionally. I feel like she is where I was four years ago. Every time I go to an appointment, she insists on coming with me. I love her to death, but I wish she didn’t suffer as much as she does. Thankfully, Milo was too young to understand much of it and I don’t think he’s suffered from the whole experience. Most of the time, he just thought he was going on vacation because my sister in law would take him while I was having extended treatments or surgeries. .
Another Cancer Challenge
While I was going through cancer, my dear friend, Agnieszka, whom I had worked with closely for over 10 years, was diagnosed with breast cancer. We became cancer buddies. We could call each other and have profound conversations about life that it would’ve been impossible to have with someone else. Anyone who wasn’t going through the same existential crisis would have freaked out. Her prognosis was a lot worse than mine, and I hope that it helped that she could say things to me that she had no one else to tell. Sometimes she would even say “I’m not ready to tell this to my family yet” or “I don’t have another friend that I can just say these things to.” And I would just listen and understand.
Over that time, we got even closer. And when Agnieszka’s cancer metastasized and she deteriorated, her other friends and I wanted to coordinate to make sure she had the right support all the time, that she knew someone was always thinking about her, talking to her husband, and helping as much as we could. But it was a challenge because we were all living in different places. And it was seeing the challenges from the caregiver perspective that gave me some new insights into the cancer experience, including into how hard my cancer was for my mom.
A New Approach
That’s how the idea of My Care Crew came about. Having seen from a patient, friend and a caregiver’s perspective, I really got it, and thought that technology could be used to help. Agnieszka and I started talking about doing something about these challenges using our technology experience to launch something. We wanted to create an environment where the right kind of conversations could happen. When we started putting some ideas on paper, other former colleagues wanted to help as well. We spent about six months working on it together before she gained her angel wings, and I have carried on with it since then. It’s a real passion project for me.
Recently, Milo started getting curious about what I was working on and one day he asked me point blank, “Why are you so focused on doing this for other people?” By that point, he was already nine, so I decided it was time to tell him about my cancer. I don’t know if it was the right time or not, but I think he took it in a positive way. Now he even likes to help in small ways with the app, like weighing in on color suggestions or layout.
The emotional response to cancer really kicked me in the butt—took me to hell and back. It’s amazing how emotional it is and yet we just don’t talk about it. If I had been warned about how emotional the process of cancer was going to be, maybe I wouldn’t have waited so long to seek help. Rather than thinking that I was going crazy and that it was just me, knowing that it was all part of the process would have encouraged me to seek help from somebody who knows how to navigate all this.
And the roller coaster didn’t end when I was done with treatment. Even going from being a patient to a survivor was hard. It was so surprising, and because it coincided in so many ways with Agnieszka passing, I felt so guilty hearing the doctor say there was no evidence of disease. I started crying uncontrollably when I heard that—I got good news, and she didn’t.
After being in survival mode for so long, your brain doesn’t catch up to that information, and your soul doesn’t catch up to that. You don’t wake up the next day and say, “now everything’s fine.” Instead, that’s when you start to realize more and more that everything is not fine, that you have to deal with all these emotional things you put on hold because you could not deal with them and the physical aspects of cancer at the same time.
What do you do with all of this pain so that at least it meant something? It’s possible to go through that terrible time of anxiety and stress and feeling like you’re being pulled apart, and still come out the other side focused on figuring out how to become a better person.
That’s why My Care Crew is such a passion project. What can we do to help more people? How do I take this pain I experienced and help other people go through cancer a little more easily? I guess it makes it worth it for me to have gone through such an unpleasant experience for so many years. I’m excited to get to work every day in a way I’ve never felt with any of my prior jobs. It’s such a privilege to be able to say that. I don’t think I’m the same me I was before. I think I’m more the me that I’m supposed to be, or at least, that I strive to be.