Knowledge is…power?

When I was eighteen, I went to school for nursing. I received a full scholarship and a monthly stipend to cover my expenses while I attended college. My classes were already picked out for each semester, as well as the books that were needed and the amount of time each class would take. It all seemed to fall into place nicely!

At orientation the week before school started, I met with all of my teachers, the faculty and my fellow students for a few hours and learned all about the next few years of my life. During the last portion of orientation, all of the students were taken into a room and asked to watch a nurse draw blood. I thought it was odd that they would show us that during orientation, but I took my place in the front and watched excitedly.

The nurse gave us her standard speech, walking us through the process on how we would draw blood and proceeded to do just that – draw blood. I went pale. I could feel my heart beating in my ears and I worried I was going to pass out. She asked if there were any questions before she demonstrated the process a second time.

I turned and walked out. I was going to be sick. There was no way I would be able to draw blood from anyone, at any point, ever, in my life.

I walked out of nursing school and never looked back. To this day, I turn my head every time I need to have blood drawn.

Today received a phone call to register me for my port placement on Tuesday. After asking the same questions that I have answered at least a dozen times so far, the nice woman on the other line asked me what questions I had for her.

Me: “They’re gonna knock me out for this, right?”

Nice nurse woman: “Excuse me?”

Me: “I won’t be awake for the procedure, right? They’ll put me to sleep and I’ll wake up and it’ll be done?”

Nice nurse woman: “Well, you’ll meet with an anesthesiologist in the morning, along with the doctor.”

Me: “Right. To put me out, right?”

Nice nurse woman: “They’ll drug you enough that you won’t know what’s happening.”

Satisfied with that answer, I hung up. I started to put my phone away and then decided I wanted to reassure myself further by searching the internet.

Big. Mistake.

There were lots of webpages about the ports that I could read but what caught my eye was a YouTube video.

Against my better judgement, I clicked.

I shouldn’t have clicked. I should have stuck to the articles.

It’s not that I didn’t expect to see the blood or the incision or the process; that’s why I clicked on it. What I didn’t expect to see was the guy awake! Talking to the doctor! Who does that?! Of course I couldn’t turn away and I continued to watch the entire 5+ minutes of the video so I could witness the entire process from start to finish. The entire time the doctor worked on the port placement, he talked to the guy, asked him if it hurt or if he felt anything, told him what he was doing, all as if they were chatting over a cup of coffee. The guy seemed totally ok with this interaction.

I have absolutely no interest in that. As a matter of fact, I don’t really want to know it’s happening at all. I much prefer to take a little nap, wake up and be all done. Maybe even sleep in the car ride home, too.

Therefore, I’ve decided I’m demanding to be put under during the process. I’ll let you know how well that works out for me.

You never know

Today the official countdown begins. My port will be put in place on Tuesday and chemotherapy treatment will begin next Thursday. One week. Someone told me today that I seemed calm, considering what the next week will bring.

I made a list of the things I wanted to accomplish before I begin treatment – a shopping list of things that will make managing the side effects easier, prescriptions to pick up, blood work, etc. While treatment will not be disabling, it will be uncomfortable and I want to accomplish what I can ahead of time to make life easier once it starts.

The prep work that goes into treatment takes up a lot of time. I’ve lost count of the doctor appointments already, plus the scans that are needed and the phone calls and the paperwork. Experiencing so much in such a short amount of time has given me exposure to a lot of people. My doctors and nurses are amazing – truly incredible. They have embraced me, reassured me and answered questions that I didn’t know I had. The overwhelming majority of interactions that I have had in recent weeks have been pleasant, if not wonderful. These interactions have made the experience just a little easier, whether it was through a laugh over the phone, a pleasant smile or the reassurance that I am making the right decision. They have been through this with other patients before me and understand the toll it can take.

There were a few occasions that went against this norm. People that seemed unhappy in general and spoke to me as a number or the “next in line” rather than a person – a person facing a life altering battle. It generally catches me off guard, when I encounter someone like this. I am ashamed to admit that on one occasion I responded to such a person with, “I have cancer. I just need your help to make this happen.” She helped, without further hesitation.

I learned today that two people I interact with daily are facing their own battles, similar to mine, and have been for many years. They are both strong, happy people who always greet me with a smile. Yet I had no idea that they were experiencing something so similar to me. You never know the challenge that someone is facing.

Maybe I am calm. Maybe I am taking this better than expected. I won’t put my life on hold for this. I won’t let it consume me. I won’t let it cause me to be unhappy. I won’t let it give me an excuse to be mean to other people.

I will continue to greet each person that I meet with a smile. I will continue to be kind. I will continue to treat others as I hope they will treat me. Because you don’t know the battle that person is facing. You don’t know the lives you may be impacting. You don’t know the way your smile may brighten someone’s day.

Young & Strong

After sharing my diagnosis with friends within my office, they offered to treat me to lunch with a promise of fun and laughter. While at that lunch today, and amongst the giggles, they surprised me with a gift – the Alex & Ani bracelet “Young & Strong”. It represents “Faith, Hope, Determination” and is completely perfect. They knew exactly what I needed – food, friends, laughter and a reminder that I am loved.

I often hear people tell me how strong I am and that my strength will get me through this journey. I can’t help but smile when I hear this because I don’t feel strong. I don’t feel any stronger than I did a month ago or even a year ago. I don’t feel strong in the moments that reality sinks in and the battle ahead looms. I don’t feel strong after I finish a day of testing and cry because I ordered an iced coffee and was given a hot coffee. Fear, anxiety and the unexpected await me each day.

This is an unexpected detour in life. Amidst all of this uncertainty, I remind myself there is only one path forward. There is no alternative, no negotiating, and no second or third option. There is only the future – treatment. Treatment that will allow me to be the Maid of Honor in my baby sister’s wedding and a bridesmaid in my best friend’s wedding next year (even if I show up in an afro!). Treatment that will allow me to watch my son grow up. Treatment that will allow me to grow old with my husband. Treatment that will enable me to have a lifetime ahead of me filled with happy surprises, belly laughs and the most amazing memories.

Faith, hope and determination is what I have right now. Why? Because of my family. Because of my friends. Because you believe in me and you believe that I can beat this.

That’s what keeps me going. You give me strength.

Strength!

Radioactive, baby

I had a PET scan today, which was an interesting new experience. I was injected with a radioactive substance to identify areas in my body where the cancer may have spread (we’re praying for NONE!). Setting aside the obvious anxiety over the looming test results, I can’t be within 5 feet of my sweet little man tonight because I am considered “radioactive”. It breaks my heart that I am missing out on our bedtime routine of stories and rocking but makes me appreciate that much more the time I will have to snuggle him tomorrow. This test will allow my doctors to accurately assess my staging and while the treatment regimen would be the same, it will provide a better understanding of what I am fighting against. This one night away from him will allow me to have every night going forward with him.

While awaiting the test, I envisioned my skin beginning to glow and bursts of light jumping onto anything that I came into contact with afterwards. Throughout the day, I became very conscious of the things I touched and the people I was around. Not that I am contagious but because I kept envisioning this glow of light around me that emitted radioactivity. How far does this glow reach? Does it pass from one person to the next? When does this glow fade? Can people see it? Does this make me a superhero?

When my husband and I decided to share my diagnosis with the world, we did it because it felt right. We wanted the people we care about to know what was going on in our lives and the battle we were facing. We wanted to be honest, upfront and real about what we were experiencing as a couple, as a family and as individuals. We wanted to bring awareness to the reality that is breast cancer.

What I don’t think I could have ever anticipated is the complete outpouring of support, encouragement and love from all around us. We have been blessed in more ways than I can begin to count. While there is an uphill battle ahead, I find strength in the blessings and love that surrounds us each and every day. The words of encouragement, the prayers and the support mean more than I can put into words.

Unlike the radioactivity that will leave my body, the love that I feel will not.

To all of you who have wished us well, reached out to help, offered a warm hug or stumbled across this blog and decided to return – thank you. I will continue to envision this glow around me that will provide strength and healing in the months ahead. Because that, my friends, is the superpower that I need. And you have all so willingly and selflessly offered it.

Thank you.

What’s in a name, anyway?

Last week I visited family. While one of my best friends was talking to me, she said my name. My nephew, who’s 6, quickly corrected her. He informed her that she was saying my name wrong and proceeded to correct her.

“MEGhan. Not MAYgen,” he repeated.

My friend played along and tried to say my name correctly but each time she started talking to me again, he would pipe up that she was saying it wrong. This made me smile.

Eleven years ago, I had the exact same conversation with my husband’s brother, Mike (that says something about my maturity at the time, huh?).

“It’s MEGhan. MEG. Not MAYgen,” I would say over and over again.

“Right, that’s what I said,” he would counter.

As much as he tried, “Meghan” just wasn’t happening.

“I’m just gonna call you Red. It works,” he said, pointing at my strawberry blonde hair.

And thus, Red was born. Many people at the time didn’t know me as anything other than Red. I was introduced as Red and answered to Red. I never thought twice about it.

When Mike passed away suddenly, being known as Red faded. It became a fondness that I looked back on and a memory that I would never forget. I still treasure the nickname because it represents a time in my life when I was fearless and free. It is a moment in time that I have captured and that reminds me to be me.

I told my husband during our family visit that I wanted to start a blog to discuss my journey but couldn’t decide on a name; an identity. I tossed around a few ideas, all of which had “Red” in it. My husband didn’t even hesitate.

“Red Phoenix. You are going to rise up and beat this. This is you.” He said as we drove. I smiled.

It was perfect.

Just as Red holds special meaning to me from a decade ago, so will Phoenix in time. It represents the person that I am now and the person that I will be.

I will rise up from this.

I will conquer this.

I am Red Phoenix.

Our family of three

Having a 1 year old, my husband and I are often asked when we are having another child. We brush the question off with jokes about being “too tired” or that daycare is “too expensive” but we have truly been on the fence about it. We are so grateful for the sweet little man that we have been blessed with and we are happy with our family as it is now. The thought of another child has been pushed aside and filed away to worry about later.

One of the decisions we have had to make over the last week was whether or not we want more children in the future. Having to make this decision so quickly was not easy. It came with a lot of tears, a lot of debate and a few glasses of wine.

Our options were to freeze eggs, freeze embryos or take a drug that will shut down my ovaries to prevent as much damage as possible while I undergo chemotherapy. How does one make a decision like that?

As we sat in the doctor’s office and discussed our options, they laid out the timeframe for us. I must be cancer free for 5 years before attempted to carry a child again. My chemotherapy plan goes through September 2016. It would be at least 6 years.

It takes approximately 10 days to harvest eggs; sometimes more and sometimes less. I would need to start the medication immediately, which needed to be given multiple times a day, and would eventually need to have surgery to harvest the eggs. I had 11 days before having my port put in and 13 days before starting chemotherapy.

“What happens if I need more than 10 days?” I asked the nurse, her eyes wide.

“Most often, people push out their chemotherapy.” I started to cry.

It’s not enough time.

Could I do it? Yes. Do people make this choice every day? I’m sure. Is it worth the risk of pushing out my chemotherapy? No.

There were a lot of tears. Tears for the decision that needed to be made when it shouldn’t have to be. Tears for a choice that I didn’t want to make. Tears for the little boy that I call my son.

I believe everything happens for a reason. I have always believed in that. I am so incredibly blessed to have an amazing son who is healthy and happy and full of energy and life. Our family of three is complete.

The nitty gritty

It’s a lot to take in.  Things happen so quickly and there are doctors and blood work and scans and somehow I have to make sound decisions and trust my judgment. At night, things sink in and in the silence of the night I realize the gravity of the situation and the importance of each decision that is made.

Back in April, I went for my well woman exam and my doctor felt a lump. Since I have no risk factors and was still nursing, it was assumed to be a clogged milk duct. This made sense, as I had issues with clogged milk ducts frequently. A few weeks went by and my armpit started to hurt. I thought maybe I pulled a muscle doing yard work and moved on. A few more weeks went by and the pain was getting worse so I went back to the doctor. That same night I came down with a fever and chills so I was treated for mastitis. A mammogram was scheduled for the following week to confirm infection.

Assuming I had mastitis, I refused to let my husband come to the mammogram with me. It didn’t make sense to have him sit in a waiting room with me for a few hours. I had an ultrasound first, to determine whether or not I should have a mammogram. As I laid on the table, the technician began asking me questions about the lump “getting bigger” or if I had “redness or dimpling”. When she left the room and mentioned that the radiologist may want to talk to me, I grew concerned. They sent me in for the mammogram and as I waited to be called back I texted my husband that I was scared. Of course he was angry that I wouldn’t let him go with me but I kept thinking, this must be some weird breastfeeding issue!

After my mammogram, the radiologist called me in and sat me down. He told me that it isn’t mastitis and it isn’t a cyst. It is a solid mass and needs a biopsy. I asked about the specifics but he never said what he suspected, though I could read between the lines. By the time I reached my car, my doctor was calling me. He shared that the radiologist suspects that it is a form of cancer and that he would send my information immediately to a breast care specialist.  He apologized for the news.  I broke down. It just didn’t make sense. I was supposed to have mastitis!

The specialist called me at 7am and asked to see me at 945. Everyone in the office was sweet and the doctor was thorough in her exam and biopsy. She anticipated that when she attempted the biopsy, there would be obvious signs of infection immediately. When she began the biopsy and the infection signs weren’t there, I watched her demeanor change. “Are you concerned?” I asked. “I am very concerned. We need to be aggressive no matter what this is.” Ok. Let’s be aggressive. Hoping for the best, she prescribed antibiotics and said she would call immediately with the results.

The next 6 days I spent googling everything and anything that I could possibly google about breasts. Breasts and nursing. Breasts and mastitis. Breasts and anything that isn’t cancer. Breasts and cancer. I had decided many times over that I had the 1 in a million different benign conditions that existed. Because there was no way that I could have breast cancer. I am too young. I am nursing. I am healthy. I have no risk factors!

But at night, when the world was quiet and there was no hiding, I knew it was cancer. I began to accept that reality. In a way, I think it made things a little easier when the doctor confirmed my fear. Though, I don’t think that anyone can ever be prepared to hear those words.

I have since learned that I am ER/PR negative, I do NOT carry the breast cancer gene and I am HER2 – NEU positive. This is all good news, from what I understand. The HER2 – NEU is particularly good news because, although this type of protein is only present in about 15% of breast cancer, it means that I am able to receive an additional antibody during my treatment. This treatment is supposed to be pretty awesome in terms of its cancer killing abilities – YAY!

That’s the story of the longest few weeks of my life. The weeks that my life took an unplanned detour. The weeks that changed everything.

That’s all for now. G’night folks. Sweet dreams.

I have breast cancer.

When pregnant with my son, my goal was to nurse him for an entire year.  In the beginning, this was harder than I anticipated but we persevered.  When J turned 1 in July, we began to wean and only nursed at night.  I was so excited that we had made it! Although I planned to continue weaning, I wasn’t in a rush.

When I went for a breast biopsy, the doctor told me to wean faster because she was “very concerned”.  That night was the last time I nursed my son.  I cried.  A lot.  I thought we had time to keep weaning.  I thought the middle of the night nursing would continue for a few more weeks.  I wasn’t ready to stop.  But I did. I think that has been one of the hardest parts of the last few weeks; stopping breastfeeding before I was ready.

The day that my son turned 13 months old, I was diagnosed with breast cancer.  I have invasive ductal carcinoma in my left breast and lymph nodes.  As I sat in the chair holding my husband’s hand and listening to the doctor explain what this meant, what the treatment would be and what the next steps were, my head spun.  It didn’t make sense.  How does this happen?  I am young, nursing and healthy. I have no known risk factors.  Why?  I struggled with trying to understand throughout the appointment as the nurse scheduled my follow ups, gave me directions for blood work and handed me tissues.

By the time my appointment ended, my mind had shifted. I knew what needed to be done and had a plan to make it happen. I focused immediately on accomplishing these tasks. All I could think was, I have to beat this. I will beat this.

The coming months will be challenging. The most challenging of my life and my family’s life. I am scared, terrified, really. But I know that I can – will – beat this. I don’t know what this blog will bring but my intent is to share my story. This journey. That’s all for now.