The most overlooked people in my Metastatic Breast Cancer journey are my oncology nurses and my oncologist. These brave woman have a hard job. They watch people at their weakest points, they say their goodbyes when it’s time, and they cheer when the battle is complete. It’s especially difficult for them to watch the young ones go through a battle that is not going to end until the universe takes us away.
They smile when you need a smile. They pretend they aren't swamped with patients as the line for a chemo chair grows around the corner. These woman are the unseen warriors who keep us going. My starling angels! (A.k.a Starling Darlings)
Over the past year I've been fortunate to have had such a remarkable oncology nurse. It was her idea to do the Mariah Carey video! Rachel always made herself available to me and she always cared. Chemo is scary, accessing your port for the first time is scary, the endless needles in the beginning are not something you look forward to. Mooning someone monthly during my monthly lupron shots - somehow she made that fell normal and not uncomfortable.
Your oncology nurse is one of the first people to help you process bad news, to cheer and share your achievements when you get good news, and to see when you feel you need a miracle to keep you in the fight and then make it happen.
When you see me leave the doctors and wonder, “how do you do it?” or “how do you stay so positive?” Well, for the past couple of hours I was surrounded by Rachel and other astounding women who somehow know how to make you feel “okay” and normal.
They know what NOT to say and they let you say all the negative things. For such a depressing job at times they will always welcome you with a smile even if they just supported someone while they’re puking. Chemo centers are not usually a place ANYONE wants to be but somehow I look forward to going there because I get to see them!
A week or so ago my nurse Rachel informed me she was leaving. I was confused because I thought she was going to tell me something good! I didn’t know how to react because I’m losing a fundamental piece of my journey. I would be scared out of my mind if I didn’t already know there are many other amazing women who are there to help me, but Rachel gave me hope, faith and encouragement. Rachel will be going on to help more woman and men in my situation. Rachel will be helping the quality of life of so many more, but selfishly I – of course – don’t want her to leave. SO, DON’T, Rachel… lol… but I know it’s your time to touch more people’s lives.
I can say about Starling that you will never feel unloved while you’re there. So if you ever run into an oncology nurse say thank you, thank you for standing by the side of people who are facing the worst possible scenario life can offer.
Check out the video of Starling Infusion Center. I am featured with Rachel & my Oncologist!!!!!
Why did you marry someone who can’t have kids?
I’ve had my ups and downs in life just like everyone else. Everyone asks how I stay so positive during blow after blow of bad news. Some people have asked me if I have “mourned” yet. And up until recently I have not entirely understood what I needed to mourn. I have also read blog after blog about how people say the craziest things to people with cancer. And again I didn’t understand that until recently, either.
Working in the disability field I'm used to subtly correcting people because people truly don’t know what to say in an uncomfortable situation. But recently, I have heard the most hurtful things that even I couldn't push aside. Of course I tried, but after a month I finally broke down.
I’m strong, I'm a Capricorn. We are strong, confident people for the most part. But I'm not indestructible, and I can feel. I mean, I feel all the time! I feel fear, sadness, loss, disappointment, and so much more. I’m just great at hiding these things. But it’s getting to a point where it’s time to show this side of cancer.
Before cancer, I held off having kids because I wanted to get married and be ready. I knew that there is not a perfect time to have kids, but this was definitely something Martin & I were planning in the near future. Then I got breast cancer. I tried so hard to preserve my eggs in hopes that when I beat this I would still be able to have kids. I had all the pre-shots and an action plan. Then I was magically upgraded to Stage 4 days before we were starting the egg preservation shots. I went through months where I prepared myself for death. Things are a little better now. So, it’s not surprising I'm now needing to mourn my loss.
I lost my fertility. I will not have kids. Cancer is not all butterflies, but it truly is battled in the face of unimaginable losses.
So when – a few weeks ago during a heated conversation – the words, “why did he marry her anyway when she can’t even have kids” passed the lips of someone who is supposed to love us, I tried to not let it affect me. This family I am using as an example is famous for harsh and thoughtless comments, so I was by no means surprised. But now, after a few weeks, I cannot get the words out of my head. Why? Why not just let it go? Life is so short; why let THAT bring me down? Well, because they were more than just words. Those words made my whole picture complete – in the sense of THIS SUCKS!
I usually hold my head high. And I see the positives in having this disease wherever they are. Sometimes it’s like finding a needle in a haystack, but I do! But living knowing I'm affecting my husband’s life and the lives of many other people is tough. I know that his mother wanted more grandkids, and I'm sorry I can’t give her that. I know Martin didn’t have a father growing up and would love to be a dad. And, again, I'm sorry.
I’m sorry I'm going to die and you will be alone. I’m sorry I got cancer and it hurts you too. I’m sorry I’m not as good at working because I lose my memory and thought constantly. And mostly I'm sorry to myself, because I hoped I would be strong enough to follow the saying: “Sticks and stones may break my bones, but words will never break me.”
I’m not broken. I won’t let this destroy me. I will rise again, like I always do. And I will support my husband anyway I can through this, just as he supports me every day.
The simple moral to this story is that we all go through rough patches. But, think before you speak. I haven’t had all my life circumstances yet, and I'm not sure what they all will be. But there really is so much good, even where there is so much bad. Maybe we will adopt some day – just like my parents did – or maybe we will stumble across another option that is right for us. I couldn’t imagine having a kid with everything that is going on right now. But for me, the loss of my fertility might have been my biggest loss.
Well, anyway, my apologizes for the not-so-uplifting post, but sometimes awareness is sharing your story in its entirety. For me, sharing this part of metastatic breast cancer is probably the hardest. It is in these moments of living with cancer when it feels most real. Many of us are so incredibly strong that it’s easy to look past these deeper struggles we face, and cope with, from time to time.
This past March I published a story highlighting my 1 year anniversary since I found my biological family. I've been very fortunate to have a few reporter interested in following my journey. Sarah Cody from Fox 61 and a editor for the Hartford Courant contacted us in hope we would be interested in doing a piece on my adoption.
Many adoptees have difficult gaining access to our birth records since their are many barriers in place to protect the birth parents identity. We are happy to be featured and help stress the importance of access to medical records and history. When I first discovered I had breast cancer my family new it was time to push against the system and find my biological family.
Check out the article! And enjoy your morning coffee Monday morning while watching our piece on Fox 61 at 7:50am & 8:50 am!
I did not know at that time that 6 months later I would face breast cancer, I did not know how challenging it would become to juggle working, building a new non-profit and managing breast cancer all at the same time. During the first few months of my diagnosis I took a step back and thankfully Community Navigators was in a good place for me to take a step back for the time being. Goes to show you that even when you think your healthy and have all the time in the world to make your dreams come true; you never really know what the future will bring so YOLO! (You only live once)
Before breast cancer decided to impact my life, I worked a lot but I didn’t mind. I personally have known I wanted to help people with disabilities since I was a young girl. Unlike my friends in college who did not know what they wanted to do when they grew up, I knew what the track was for me.
I attended Southern Connecticut State University to study Therapeutic Recreation with a focus on disability studies. Including people with disabilities within their communities was always something very important to me. After gaining experience in different aspects in the field I knew for me to be truly happy I would probably need to break off and start my own agency to help individuals with disabilities and their families. In 2014, my boss passed away to cancer and I knew it was time to jump and take a risk. By 2015, I gave my notice and announced the beginning of Community Navigators, a non-profit driven to help create inclusive opportunities in individuals own communities.
Now that i’ve been battling breast cancer for over a year its time to try get back into the groove of life and work. CNI means a lot to me and my husband left his trucking business to fill my shoes while I was in treatment. It confuses people why i’m a volunteer CEO, well treatments make you tired, my hip can make it very challenging to help people when its flaring, I am not where I was physically before cancer and I can’t always anticipate when I can assist.
Many of us woman & men with metastatic breast cancer look good and healthy. Many of us put on a phenomenal act to continue to live in the world everyone else lives in. I struggle feeling guilty not being able to do more. I’m learning how to make compromises with life. Life keeps going and its moves very quickly. You see friends and others growing in their professions. You see other thrivers working like they are not sick. All of this makes taking it easy and taking care of yourself very challenging because you don’t want to be left behind. But the biggest reality is I (we) can not rely on generous donations forever and in order to keep a roof over our heads working has to happen. Disability is helpful but it doesn’t pay the bills.
Most people you see lately who get struck with cancer their go-fund me pages help them through the worse part of their journey. All the help we realized definitely helped during the initial part of my journey and couldn’t not be more thankful for all the love and support! But we cannot depend on everyones generosity until my cancer ultimately wins.
Some of my best friends have intellectual disabilities and they stood strongly next to me during the beginning of my journey, so I never stepped away from “work” and i’m lucky I don’t view spending time with people with disabilities as work but as time with my friends. But when I try to jump back into everything the biggest battle working is doctors appointments, fatigue, bone pain, chemo brain and insecurities of cancer; makes it a serious challenge. I rarely work alone, Martin or someone is usually with me. Not because I can’t work alone but it gives me a sense of support. I’m happy my knowledge and years of experience keeps me needed and included. Yes, keeping my mind off cancer and doing something else is wonderful but hard to keep balanced. I’m a go getter so its hard for me to stay on the side lines and my body tells me very loudly to stop and slow down. I’m learning how to listen to my body and not be super woman.
I am very confident but nothing prepares you to explain all the time I don’t feel well there is no way I am get up. Its even harder because you know you look healthy.
Want to know more about the type of work I do? Feel free to check out CNI's website!
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