In honor of #breastcancerawareness month - I’d like to share my personal story with you because it’s going to take every single one of us to bring more awareness to #cancer. Join me on my journey, won’t you?
Part 1: It began with exhaustion. Maybe it was nothing. Maybe a whole lot more.
I was more tired than I had ever been before. I was sleeping 10 hours a night, and I was still exhausted. Perhaps I should be rethinking my planned European trip, but I just couldn’t.
After all, my husband Mark and I had been planning this trip for months. I was excited about the trip…my first visit to Europe. My husband Mark works between London and Paris every single week, so we planned for me to meet him there in lieu of his flying back to the States.
The trip was perfect. It was wonderful to see Mark’s life there, his work, his favorite places to eat. I really loved exploring both London and Paris. Even better, it was a sweet moment for both of us because it’s been a roller coaster lifestyle this past year with his frequent trips working abroad.
But, I was also dog-tired. It really hit me that I simply couldn’t keep up with him. What the…? He’s 18 years older than I am, and I can’t keep up with him? Okay, I admit, most people can’t keep up with him, but I sure thought I’d done a pretty good job with it… until now.
That’s when I first noticed a few changes. A change in my sleep and a change in my pace and my energy. I thought maybe I was just slowing down at the ripe old age of 33. But maybe it was my diet too. I’ve been in a battle with that for a long while. Maybe I’m not eating well enough.
Or maybe it’s nothing? So, I shrugged it off…for a while.
Shortly after I got back to the States, I experienced some hardcore jet lag. I’ve traveled a lot in my short life, but this trip was hard to bounce back from. I kept thinking about how Mark does this every single week. He arrives home on Friday evenings and flies out on Monday mornings. So he never really changes or adapts to the 6 or 7 hours’ time zone change… he just goes and goes. How does he do that?! I know I couldn’t!
I remember around the same time I arrived home, I felt an uncomfortable sensation under my armpit. I felt around and noticed that I had a little bump there. Hmmm…I thought for a minute to recall if I’d done anything strenuous or hurt myself in any way. I didn’t think so. But nonetheless, it was a little sore, so I thought maybe I pulled a muscle or I played too hard with my dogs. I didn’t know what to think.
But the little bump quickly grew.
It started feeling like a golf ball in my armpit. I was more aware of it because I could feel the growing bump even more so now. I decided to feel around, explore further and do a breast self-exam.
Everything else felt fine… generally, I have pretty dense breast tissue anyway, so I thought it could be that I’m just lumpy. Nothing more.
I checked my appointment calendar and noticed that my next OB/GYN appointment was already on the books in about 30 days. No need to rush or worry unduly (or so I thought). I’ll just wait to have my doctor do an exam and ask her about the lump.
As I mentioned, I’m only 33, and I don’t go to a normal (primary care) doctor for anything. The only time I’ve ever visited a doctor was for my regular yearly well-woman exam. My life was pretty boring on the doctor front. I’ve never had surgery before, never broken a bone… nothing. I’ve been a pretty healthy woman and have been a pescatarian now for at least a year. I feel like I should be at the top of my game, right?
Running a successful business. Check.
Living a pescatarian lifestyle. Check.
Living with my better half and our two rescue pups, at the beach, in Florida. Check. Check. Check.
Life should be good. Great, actually! Then, why the hell am I so tired so often?
Maybe it’s the wine I drink at dinner? Maybe I’m allergic to it?
I don’t know.
All of this was running around in my head while waiting around for my doctor’s appointment.
The day came to have my regular OB/GYN check-up. Everything checked out fine…until she did my breast exam. I explained to her that I have had this lump in my armpit.
As I was showing her where it was, I felt it again. Now it had grown to what felt like the size of a tennis ball. Ugh!
She asked me some questions. Did I get hit? Did I do anything out of the ordinary to hurt myself there? Do I have breast cancer in my family?
To the third question, my answer was yes. My grandma passed away from breast cancer when she was around the age of 60.
The doctor’s response wasn’t alarming, “Let’s send you over for an ultrasound just to make sure everything is good to go. But just know, this is super routine, nothing for you to worry about. This happens all the time.”
I called and scheduled my ultrasound. The appointment was about two weeks later. I was still not really alarmed because I felt comforted by her words of, “…nothing for you to worry about.”
The ultrasound turned into still another appointment two weeks after that one for a biopsy. Initially, they were going to just biopsy the lump area, but at the last minute the doctor came in while they were prepping me and said he’d reviewed the ultrasound once more and would like to take some additional biopsies of the area and of my lymph nodes in that area as well. As long as I was okay with that, he’d proceed with getting the order from my OB/GYN, and they’d proceed.
I was scared at this point because I didn’t really understand what all this meant. The doctor who was doing the biopsies couldn’t say anything until they were tested. Here I was terrified in a room with a bunch of doctors and nurses and no one had answers to anything. I felt vulnerable and helpless.
So, there I lay…in a lot of pain caused by all the times he removed tissue to biopsy with this gun-like-thing that kicked back every time he took a piece out of me. Two. Three. Four. Five times, I counted. Six. Seven. I’m pretty sure I heard eight total times.
After they did the biopsies, they shot a tiny marker in that area to “tag” (or mark) the areas where I was biopsied. To ensure those markers were in there correctly, they had to stand me up and walked me over to the mammogram machine to check the markers.
All I remember is standing in front of this machine I’ve never seen before, wondering what they were going to do—and the rest is history. I fainted. They caught me. I came to with them making me drink orange juice. The first thought that came to my head was weirdly, “Is this organic OJ?” and the second was, “Why was this happening?” I didn’t understand.
I started crying and the nurse asked me what I needed. I said, “My mom!” Thankfully, my mom came with me that day and was in the waiting room. My mom came in, and it was like the clouds had parted and I was going to be okay. All it took was a comforting, motherly hug and kiss.
We finished up the outpatient patient paperwork and left.
I started thinking a lot about what had just happened. I’d never had a biopsy before, nor have I ever had a mammogram. So many things are happening and they are all firsts for me. It’s scary as hell… and although I still don’t know anything yet, I’m starting to worry that something is actually wrong with me.
Over the next week, thankfully, I started healing from the painful biopsies. I tried to get back into work and my regular schedule. I knew my doctor’s office was to follow up in about a week. They said they would let us know if it’s anything to worry about. But clearly, it’s not since it’s been a few days.
My cell phone rang on that Friday morning, and I could just tell by the tone of the doctor’s voice that it wasn’t good news.
She said something like, “Would you like to come into the office and talk about your results?” I was thinking, “Why can’t you just tell me now? Why would I come to your office?!”
I said, “Nah, I’m just looking forward to hearing if you found anything.”
BIG. DEEP. FREAKIN. PAUSE.
“Chelsea, it’s all cancer.”
“What do you mean ALL?” I asked.
She said “All the biopsies came back as cancer.”
I said, “All of them?”
She said, “Yes, ALL of them.”
I broke down in tears and walked into the kitchen where my husband was. He chose not to travel that week since he missed both the ultrasound and the biopsies the week prior, and he wanted to be sure he was with me when I received the results. And boy, I was so glad he was there for me.
I handed him the phone as I began to cry hard.
All I heard Mark say to the doctor was, “I don’t understand… what do you mean? What kind of cancer? How bad is it?”
I guess the doctor didn’t know anything other than the results of the biopsy and that she had to send it along to an oncologist whom we would be meeting with to learn more about the results and next steps.
That was it. CANCER. Six horrifying letters.
So, there we were. Going into a weekend. With no answers. Only questions. Confusion. And those six letters.
“Maybe it’s just something they have to remove, right? Maybe it’s something as straight forward as a lumpectomy and then we’re good!?” Mark said. He’s so driven to fix the problem, find the solution… and I was stuck in WTF mode.
We made calls to our family. We all cried a lot.
Then, Monday came. We had an oncologist appointment at 4 p.m. Unfortunately, Hurricane Irma had different plans. Although the weather was really bad, we went anyway. There was a big sign on the door that said that the office was closed because of the hurricane.
ARE YOU KIDDING ME? We have to wait another day, another night… just because of a freaking hurricane that barely hit us (we live in the west panhandle). Okay, I get it… a hurricane IS a big deal. But when you find out you have cancer, and you’re waiting for that one appointment to tell you everything you need to know, an even longer wait didn’t sit so well with us.
The next morning my husband called the office and he demanded we get seen that day. I remember him saying, “Please don’t make us wait another day to understand what is happening. We found out my wife has cancer, and we don’t know anything else beyond that. So please help us. PLEASE!” I could hear it in his voice that he was scared too.
They were able to squeeze me in at the end of the day, around 4 p.m. We arrived and sat in the waiting room for what felt like hours. I looked around and the office was full of elderly people with chemo ports and bald heads.
Was this really happening to me at my young age?
We were finally called back into the office, and Mark and I walked into the room and sat down. They weighed me, checked my vitals… the normal stuff. Again, we waited.
The doctor came in with this very calm voice and said, “Let’s start with you telling me what you know so far.” I thought, “We don’t know a damn thing other than they found cancer inside my body and no one seems to know anything else.”
Mark had to do most of the talking for me. We (mostly he) explained what we knew.
She asked how I was feeling. We explained.
Finally, after sitting in what felt like hours of silence she said, “You have triple negative breast cancer. It’s a very aggressive form of cancer, and it was found in the lump and the lymph nodes in your armpit.”
At this point I’m only hearing about 10% of what is being said. Thank God for Mark, because he’s a very inquisitive guy. He asked a million questions. Things we didn’t understand were being talked about. Drugs, treatment, next steps. I could see his head just spinning, because all he wanted to do was take the information and come up with a simple formula to fix it.
But he couldn’t.
We just had to learn the things we didn’t know.
She said she couldn’t give us more information just yet because I haven’t had the scheduled PET/CT scan. She said that she’s going in blind, so she needs to get that data first before we can really understand the plan in much greater detail.
She ordered a PET/CT scan STAT but also put the order in for a surgeon to install a port and do an EKG STAT as well, which scared me because she was clearly wanting us to move fast on this. Later I realized it was because the cancer I have is so aggressive that days really DID matter.
I went for my PET/CT scan within a day. Then, we went back to the doctor…yet again. Now came the news that shocked me to the bone. Low and behold, the aggressive cancer had not only spread from my armpit/breast to lymph nodes in my clavicle, but potentially to lymph nodes in my neck. The diagnosis was definitely stage 3C and likely early stage 4. In either case, given my age and health history, the treatment was the same.
However, we had some good news… When my doctor came in and gave us the news of the PET/CT scan, the first thing she said was, “I have good news and I’m going to celebrate with a drink tonight!” I could tell she was relieved, but didn’t understand why. What I didn’t know at the time was my husband asked for a private meeting with the doctor after our first appointment, before the CT scan, to inquire on what she really thought about my diagnosis. Mark told me the doctor told him she was extremely concerned on the severity of my cancer.
The good news was that there was consensus that my treatment will be focused on surgery/cure, even though the fact that activity was spotted in the PET/CT scan in my neck was still concerning.
At the urging of almost everyone we spoke to, we decided to get a second opinion. Our neighbor put us in touch with a doctor at UVA (The University of Virginia) that reviewed our films and told us that while they would love for me to participate in a clinical trial, the cancer is quite severe, and that I need to start chemo immediately. I guess good news is relative…
From there, a whirlwind of appointments, next steps, plans and paperwork happened. From there, my life changed. Forever.
For Part 2 - Click here.
For Part 3 - Click here.