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Diagnosed Twice: What I've Learned on My Breast Cancer Journey

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I still remember it like it was yesterday. After months of examinations, biopsies, ultrasounds, and other related appointments, I was told I had breast cancer. It was December 2011, a few days before Christmas. I was in shock. I didn’t have a lump or feel sick. It was happenstantial that I found out via a mammogram I was too young for because of another benign related issue when they randomly found a cluster of cancerous calcifications that looked suspicious. I wasn’t told much information and all I thought of was that I was going to die. All I knew about the “C” word is that you die. At least that is what happened to other members in my family that had some sort of cancer when I was growing up. My second thought was “why me”. I had just gotten married a few months prior and hadn’t had children yet. I was only in my 30’s and hadn’t really lived my life yet. I was deep in sorrow for a few weeks trying to make sense of it all.

Fortunately, I was able to educate myself on what exactly I was diagnosed with and was able to do research on potential doctors, treatment options, and my probable prognosis. What I learned was that I had an early stage of breast cancer known as DCIS or Stage 0 breast cancer. Come to find out that even though DCIS is in the cancer family, some doctors don’t even necessarily consider DCIS a real type of cancer, but more of a pre-cancer, since the cancerous cells are inside the milk ducts, and haven’t spread yet. The only problem is that it could turn into invasive cancer and since they don’t know which cases will and which cases won’t, they have to treat it as if it will spread and act accordingly. DCIS itself is not considered life threatening and has a very positive prognosis but it didn’t change the fact that I was still terrified and in somewhat of a traumatic emotional state of mind. Everyone was still treating me like I had cancer and was suggesting treatment similar to someone with a more invasive stage of the disease. All of my appointments were in the Cancer Center and all of my doctors were cancer specialists. Some people would almost undermine my diagnosis making it sound like it was no big deal, which felt very invalidating. However, I felt extremely blessed, lucky, and thankful that I wasn't worse. It's a peculiar spot to be in. Everything still felt unknown and at the end of the day I was still left with a cancer related diagnosis. A few months after I was given the news, I ended up having two surgeries and becoming a "cancer survivor" with a scar that would be with me the rest of my life. Furthermore, I would always have a dark cloud over my head in fear that one day it could return.

This entire experience changed my life. The carefree part of me was gone. And I felt like my youthfullness was stripped away from me and never would return. I saw life from a different lens now. I had to be forever mindful of what I ate and drank, how much I exercised, and what products I would use on my body and in my home. The surgical part of the experience was over, but I wanted to do what I could to prevent reoccurrence. I had experienced a trauma and had a higher sense of anxiety, depression, and hyper vigilance. I also never looked at my body in the same way. After living my whole life with a perfect health record and a stellar immune system, I now had a chronic disease. I felt damaged. I felt broken. I felt sick. It took a long time to heal emotionally, physically, mentally (and financially) and unfortunately I knew in the back of my mind that it would be a lifelong struggle. Even though the cancerous cells in my body were removed, cancer and the potential risk of the disease returning, was always going to be a threat.

But I had no choice but to move on. I had to wait until I had a clear mammogram six months post surgery before I was given the green light to start trying for a baby. So in the meantime, I focused on completing my dissertation and receiving my doctorate. I have since been blessed with two children. And I was fortunate to breastfeed both of them not only for their benefit but to also to further help prevent my risk for reoccurrence. I also started taking various supplements known to help prevent cancer and removed other toxins in my life known to feed cancer. I felt empowered to do anything and everything I could in my power to control what I could, but ultimately knew at the end of the day it wasn’t up to me.

Each year that I had a clear mammogram I became more confident. My strength increased and I became more brave and more healed. I also started feeling more normal. I started letting go a little on my strict regimen of prevention and started living a little more freely thinking the worst was behind me. I don’t believe there was ever a day that went by that I didn’t think about it, but it was fading the more time went on. The threat of it coming back to attack my body felt far away. I almost started taking my health for granted and felt like I would never have to deal with it again – at least for many, many years.

But only after 7 years, I was told the cancerous calcifications were back. It was like déjà vu. I went for my yearly diagnostic mammogram and was told there was a change in my breast tissue. The process felt all too familiar and brought me back to 2011 like a ton of bricks. I cried for a few days bewildered how it could be back and be back so soon.

When I went through this the first time I wasn’t a mom yet. I had just gotten married but had no obligation to really anyone but myself - meaning that my husband was ultimately an adult that could take care of himself while I sought treatment. Things were different now. This time, I am a mom of two young children. And they are practically still babies. I have a responsibility to take care of them and raise them. I can’t just go get surgery and heal on my couch for a week minding my own business. Not only would the entire process be harder for treatment and recovery, but I have more to live for now. I can’t get sick. If my life ended, who would take care of my babies? They need their mommy. They would be scarred and traumatized for life if something happened to me.

These thoughts easily consume me during the middle of the night when I’m laying awake in bed when it’s dark and quiet, but they sometimes just as easily creep in the middle of the grocery store or when I’m hugging and kissing my children before they go to bed.

Since learning the news, my mood has been gloomy. I haven’t been in a good space. My routine has been off. My head is clouded. I haven't been myself. I haven’t had as much energy. I haven’t been as optimistic and cheery. I have secluded myself from others, have become more irritable, and have fallen way behind in my work. I was starting to write my first book but now that had to go on hold for a while. Life has been a little on hold for a while since this has been all consuming.

Soon after the mammogram I had the biopsy. The procedure itself was smooth, fairly painless, and quick but after the numbing medication wore off I spent the greater part of the weekend alternating between Tylenol and ice packs to try and alleviate the pain I was experiencing. I could barely move my arm and couldn’t really pick up or hug my babies like I would normally. My husband had to pick up our son that day from daycare because I was in so much pain I couldn’t’ even lift him to put him in his car seat. It broke my heart that my little girl was so sad for me and kept trying to take care of me. She kept asking to see my bandage but then would look away in fear. If this is how it is after a routine biopsy, what will it be like when I actually have surgery?

On the outside I had no choice but to keep going. And some days I put on a really good act like I am strong and brave on the outside. Some people may not even know I have been going through this. I have been staying as busy and distracted as possible and putting on a big smile when I needed to because that’s the only way I knew how to handle it. But on the inside I have felt like I’m crumbling and living in a stressful world filled with fear and worry. And until I got my results back, I was stuck in a place of uncertainty. Most the time you can find me curled up in bed crying or sleeping. It’s scary. And most the time I feel alone even though I’m never by myself.

But here’s the thing about cancer. It doesn’t just affect you. It affects everyone around you. My parents. My siblings. My husband. My children. My boss. My co-workers. My friends. The list goes on and on. And the first time I went through this I did it mostly alone. I had only told a handful of people including my family, my husband, my boss, and a few very close friends. But as much as they tried, they really didn’t understand what I was feeling or going through. I didn’t tell many people at the time because I felt embarrassed and ashamed. I didn’t want pity. I didn’t want people to look at my differently or treat me differently. I didn’t want to be broken or sick to them. But this time felt different. This time I have told so many people I have lost count. This has helped me feel more supported and not so alone and in turn has helped others going through something similar. I have even used my social media and blog platform to share my story and my journey. Some may think I am exploiting my diagnosis but I truly feel like I am sharing my experience to educate, bring awareness, and help others. I have even partnered with one of the biggest breast cancer organizations to help spread the word and try to help support ways to bring a cure to breast cancer. Since sharing my story, I have met so many amazing warriors that have been diligently praying for me and so many women who have been going through a similar situation where we can relate and support each other. Somehow I don’t feel so alone anymore. I have had so many people who have commented or private messaged me with words of faith, support, love, and encouragement. And sometimes I am so overwhelmed by all the people by my side it makes me want to fight harder. But then it fades and I feel alone in a battle with my body.

No one really knows what it’s like to be me. No one really understands what it’s like to be in my shoes. It’s not their body that is being attacked. It’s mine. And it makes me sad. It makes me angry. I ask myself, why me? I tell myself I’m too young. I have two babies I need to raise. I lead a healthy lifestyle. I do the right things in life. And sometimes I still feel like a statistic. I still feel broken and damaged. I still feel weak and alone. But mostly I feel like I just need to get through this and that everything is going to be ok. When I received my biopsy results back confirming my DCIS Stage 0 breast cancer had returned to the same area, I didn’t panic. In fact, I felt more calm. I felt more educated and prepared. I have tried taking the emotion out of it and have just tried going through the motions. I am not so scared of the right now, because right now, I will live. I have a very low stage of non-invasive breast cancer with an excellent prognosis. But what happens in another 7 years or less? What if it comes back and the diagnosis isn't as good? Do I have to live in fear forever? What if I’m not so lucky next time? Will I have to keep having surgery after surgery? What if it’s invasive next time?

Just last week I had my partial mastectomy and reconstruction. The surgery itself was long but went well under the circumstances. Despite my hopeful diagnosis, I still had to have a four hour surgery and have been left with more incisions and scars than I can count. What has been hard is the recovery. I was in pain the first few days I have had excessive swelling and bruising that will last for at least a month. I haven’t been able to move very much or do anything – which for an active, on-the-go Type A person, this has been very difficult. I can't drive. I can't do household chores or cook for my family. I can barely raise my arms or lift anything more than 5 lbs. This means I can’t even hug, hold, or pick up my babies. I can't lift my son in and out of his crib. Can you imagine as a mother how hard this is? This has been so hard for me and them. They know mommy is hurt and had to go to the doctor and all they want to do is be close to me but I have to keep some distance to protect my body from an accidental movement that could hurt me more in the long run. It’s going to be months before I will really look or feel like myself again. But will I ever be truly healed?

I am still waiting to hear my results from the surgery and if they cleared the margins or if I will have to have another surgery. I will also find out my pathology results and if any of the other tissue and cells they removed have a sign of more invasive breast cancer – which may mean having radiation, but it looks like I definitely won’t have to have chemotherapy. Best case scenario, this part of the journey is over for now. I will continue to go for diagnostic mammograms every six months to a year praying and hoping nothing in my breast tissue will change for the rest of my life.

The fear of cancer and of death hasn’t escaped me. As a mom, it terrifies me each and every day. And what does that mean for my daughter? Will she have to go through this when she is older? According to my recent genetic testing she won’t, unless she is exposed to environmental toxins that would increase her chances, but I still worry. I have so much to live for and I don’t want to die early. I try not to let the cancer beat me. I am a fighter and I will fight the fight. But that doesn’t mean I still won’t say an extra prayer and cry an extra tear at night.

However, I have learned a lot throughout this experience. I have learned to never to take your body, health, or life for granted. I have learned to cherish each moment because we never know what tomorrow will bring. And I have learned that the show must go on. Despite the curveballs that life throws at us, we must persevere. We must push forward. We don’t have to be brave or strong all the time. We can still be human, but we shouldn’t dwell on the negative or things we cannot control. We need to have faith and optimism. I have learned to have distractions. Keep busy doing what you love with those you love. And lastly, I have learned to ask for help from others. Don’t go through something like this alone. You need prayer warriors. You need people to check on you, support you, encourage you, and help you. You need friends who will cook meals for you and help take care of your children. You need others to come help you clean the dishes, do the laundry, and change dirty diapers. I am so blessed for all of the moms in my life that have been there for me to help me through this process and I hope I can be there for others who find themselves in a similar situation offering love, support, encouragement, and help when they need it.

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