“The only constant in life is change.” – Heraclitus
It’s funny when I think about it. I’ve always loved the word ‘capricious’. I think it was one of my vocabulary words in a middle school English class. I loved the way it sounded, rolled off my tongue. It was also a word that made you sound smart. People kind of look at you with an inquisitive eye, when it is thrown into a sentence. I’m not sure why I’ve always loved that word, but now it is a word that I have become accustomed to in my daily life.
Capricious.
Ever changing.
If you know me well, then you know for more than a year and a half now life in our household has been anything but predictable. Once we feel like we have one fire put out, another one starts to burn. Don’t get me wrong. I’m not complaining. It’s just that, there are moments when I want to raise my arms in the air and yell, ‘UNCLE!”
The past year and a half (longer really), has seen my dad battle metastatic cancer; my daughter being diagnosed with an eye condition that will more than likely leave her severely visually impaired someday; a genetic mutation that I need to come to terms with both for myself and my children; a surgery, that although elective, was necessary; a diagnosis of cancer; and an infection that was so bad, that I am questioning having another surgery to make myself look like I once did.
After the second surgery
After my second surgery, I already knew what to expect as far as my drains were concerned. We had a beat, a rhythm to the process. A system in place to deal with my drains and all that they entailed. The dreaded drains, although a major pain in my sides (pun intended), were a little easier to deal with since there were only two and not four. I was emitting far less liquid than the last time the drains were in, and it stayed its fruit punch color the entire week, never changing to the milky, pinkish, red color that emitted a funky odor (clearly a sign of infection) after the last surgery.
What I didn’t expect, was what I would look like after my expanders had been removed due to the infection.
Taking off the surgical bra for the first time to take a shower was a little bit shocking.
As far back as I can remember, I had always had a large chest, but when the surgical bra came off and I peeled away the bandages, I looked nothing like I once had. You see, when the expanders were put in after my first surgery, I didn’t look much different. I looked more like myself, just a little smaller with a ‘lift’.
But this time it was different.
This time I looked like I had been sewn together like a Cabbage Patch Kid. The skin flaps, and minimal amount of fat, left behind amounted to what would be an A/B cup. I was speechless and then began to cry. Sob actually. It all hit at once – what I had been through, what I had to deal with and what was yet to come.
This was my new normal…
Drain removal
The week after my second surgery I had an appointment to meet with the plastic surgeon. He was going to check my incisions and remove the drains. It was Tuesday, March 31 and we were in full swing of the Covid-19 pandemic. Going to the doctor’s office was not on my top 10 list of things to do.
As a matter of fact, it wasn’t on my top 100, but I needed to get it done. So once again, I packed a gallon-sized zip lock bag with hand sanitizer, ID, insurance card, Clorox wipes and masks, then headed to his office 45 minutes away.
As we drove in the rain, my stomach was in knots. I didn’t want to interface with anyone and I was scared that the drain removal would hurt as much as it did the first time. To say I was sweating bullets would be an understatement.
As we pulled into the office parking lot, my husband and I donned our masks. I got a Clorox wipe out of my baggie to press the call button to his office. I opened the door with the same wipe, promptly throwing it into the garbage inside the office door, then used hand sanitizer like my life depended on it.
At that moment, who knew? Maybe it did.
The waiting room had another couple getting ready to leave. I was antsy, not wanting to be near anyone. I was sure to stand far away from them. I didn’t dare sit down. I just wanted to get out of this place as fast as I could.
Before I knew it, my husband and I were ushered back to an exam room where I laid down on the reclining exam chair. The doctor came in, made very little small talk, and then got to work removing my drains. He gave me the same instructions. Take a deep breath and hold. As he pulled there was a little burning, but nothing like what I experienced weeks before.
There were no tears, no yelling and no compulsion to curse. Just a little, ‘ouch’ escaped my lips. It was over as fast as it had begun. He said he would see me soon. I said in six months, he said, no probably in three.
I thought to myself, ‘we’ll see…..’
Telemedicine and what comes next
Here’s the funny thing about being diagnosed with a disease in the very early stages AFTER it has already been removed…
There’s nothing else to do.
Yup, you read that right. At least in my case, there is nothing left for me to do.
The cancer was removed even before I even knew I had it. Which was the point of the mastectomy in the first place, to beat my chance of having cancer, but I never thought it would be actively treating current cancer at the same time.
This leaves me feeling both scared and relieved. Relieved that I don’t have to do anything else, but scared that I am missing something and not being proactive and protecting myself.
I spoke with two oncologists via telemedicine regarding my case. I wasn’t 100% satisfied with what the first doctor told me, so I made an appointment with a second doctor, one I had seen in the city months before when trying to decide if I wanted to have a bilateral mastectomy.
Both said the same exact thing. ‘All’ (I place all in quotes because they can never really remove all of the breast tissue) of the breast tissue had been removed, my lymph nodes were not involved, they got clean margins, it was caught so early and the chance of recurrence was low, there is no need to treat me with medication or radiation.
Treating me with medication would not lower my recurrence rate any further and may actually cause other problems. I don’t need radiation since there was nothing left to radiate. And both stated that after a mastectomy, they don’t treat patients with those therapies anyway.
That was it. Cut and dry. Two different doctors, from two different hospitals telling me the exact same thing.
The only thing they differed on was that the second oncologist I spoke with was well-versed in my genetic mutation and gave me a more thorough explanation of my pathology findings. She also asked that I see her once a year for a check-up and chest wall exam and suggested I get two chest wall exams a year. One with her and one with either my breast surgeon or GYN. I like her much better than the first oncologist I spoke with, so I’ve decided to go with her.
And so we’ll move forward.
My new normal
So many people have asked me how I am feeling, especially since my body has changed so much in the past three months. I’ve been told that I carry myself differently and am standing up straighter these days. That I actually seem ‘lighter’ in body, mind and spirit.
To a point, I agree. There are still days when I feel sadness and anxiety. This has been more mentally taxing than I ever thought it would be.
It’s funny, a couple of weeks ago I had just started back into a light exercise routine. I told my husband I wanted to go for a run. I was curious to see what it would feel like. As we started out it was the most surreal experience.
For the first time ever, I could take a deep breath as I started on my journey. There was no heaviness pressing down. There was no constant motion of my chest as I took each step that propelled me forward.
All there was, was a sense of freedom.
Freedom to breathe, freedom to let go, freedom to say, ‘this is my new normal’.
These Three Are My Circus 