Write it down . . .

 

Well, I have always had a love for writing for as long as I can remember. It was therapeutic for me as I turned thirteen and faced life without a father. My father passed away three weeks before my thirteenth birthday; and writing stuff down was my way to cope. Whether it was a diary entry, a poem, a song, or just a bunch of words scribbled on a piece of paper … it was what I personally needed to do at that time to deal with my emotions.

 

Back in those days therapy and support groups weren't a big thing as they are now. It was almost taboo back in those times if you were getting "help" you were looked upon like you were a fragile human being and had serious mental issues which back in those days; people were put into institutions. There is no real handbook in life to deal with grief or the loss of a parent, especially when you are a child; nor as an adult. I think with what little help I had I did pretty well. There were issues along the way, things I could have done different; but in the end all my trials and tribulations made me into the person I am today.

 

Last therapy session I was given an "assignment" write my legacy. We spoke of a dear friend and how beautiful her obituary was when she passed last year; I always wondered what others would have written about me. So, instead of going the morbid route and writing an obituary-like writing we opted for a legacy writing. Something that I would want people to know about me and my life and what made me who I am today.

 

I think about my bi-line for my website "life is not a fairytale" and mine surely hasn't been. I started writing it in sections since I did some research on how other people put those together. I didn't just want a boring chronological look at my life, I wanted it to have substance and meaning.

 

I feel I have contributed a lot to life in so many ways, others may not see that; but then again they ought to be the first ones to read my legacy writing because they might learn something about me that they never knew. Most people think they know you because of who you once were growing up or by what you share on social media. Let me be honest, if I shared what I really thought and felt on social media I would shock a lot of people. To the point where some may realize they really do not know me at all. We all make perceptions about people by what they show us of themselves and what we see with our own eyes, is that the whole picture of who they are; probably not.

 

So I think at some point it is important for everyone to write their legacy down to leave that information for many generations to come about who they were. Stories get lost along the way … people don't write down the stories of their family or ancestors any more. This I would hope might be a last comfort for those to read our personal words after we are gone as a last conversation or last laugh depending on how it is written. I've had to learn to laugh a lot at my life over the years because laughing hid the pain, but some things shouldn't be hidden, shouldn't be shamed, but always be shared.

Taking steps forward . . .

 

I've started thinking lately about how different life has been lately. Where I was last year, the year before, and so on. How far I have come how much I have healed. It was my personal decision to stop taking the "suggested" meds and to be perfectly honest I feel normal again. I don't have that daily chronic pain and other side effects I was suffering from before. I am going to do a little more research on the anti-hormones and make a decision definitely from there. But, knowing how I feel now; I don't think at this point I am going to change my mind. The side effects were really affecting me in a bad way. I couldn't stay awake all day taking sometimes several mini naps to get through the day. What was I really able to accomplish … nothing. I could barely get myself up and moving every day almost taking three to four hours to move after having my breakfast every morning. I just felt numb and heavy and just wanted to sleep and not move around. The constant headaches are gone, the insomnia is gone, and a few other side effects that I was having that prevented me from living what I call a normal life.

 

I knew when I saw the doctor that day that I needed to have done my research and had all my notes in order to explain everything in detail to her not just that I stopped taking them because I didn't want to. There were actual reasons why and I needed to convey that to her. She was understanding especially knowing how horribly I reacted to the Verzenio a few years ago and they removed me from it immediately.

 

I gave it as much time as I could to make that decision before I started to realize how horribly it was affecting my life. I still tire out very easily but that is just because I need to build up my strength and stamina. My body has been through a virtual boxing match with the chemo, radiation, surgeries, biopsies, blood transfusion, and then eventual double mastectomy. I just could no longer take the chronic pain and the weighted feeling every day. If I was going to move forward in my life I had to ensure that I could do it without pain or without barriers. That is what the medications made me feel like they were barriers to me moving forward.

 

I've already experienced a reoccurrence once, you just deal with what comes along. I am seeing the doctor on a regular basis and just had my labs come back and they are looking very good. I just don't feel those medications were providing the benefit to me that they claimed to do. In my opinion they were holding me back. I have been held back from life for over three years now; it's time to move forward as pain free as possible.

EVOLVE . . .

 

... That is my new word that best describes where I am at in life at the present moment. I am not the same person I was over three years ago. Cancer changed that, chemo changed that, a double mastectomy changed that, and so on and so on. That person (who I was starting to finally accept and like finally) is gone. I am different … I see the world in a different light, I react to things differently than I used to. It's wild how clearly you see things (and people) for that matter after going through something so tragic and life changing. All the time you spend alone, recovering; you begin to see things much more clearer than you ever have before. See people and situations for what they really are. Sometimes that realization is not always a good one. It is one that can depress you even more when you start realizing who will be there and who won't. Going through this hell that has been the last three years of my life I keep telling myself I could never do that to someone else that is going through cancer or a life changing disease or situation. But I guess until you are in it, in the trenches living it every day; only then will you realize the errors you made with others along the way. I wish what I went through on NO one. Not even my worst of enemies; and I do have a few. This is a hell no one should endure, but one thing I need to tell others is that it wasn't given to me because God knew I could handle it.

 

That is one thing that people say that we as cancer survivors want to just scream at people for. Cancer does not discriminate. It does not care what color you are, whether you are male or female, what political party you belong to, whether you have a million dollars in the bank or one penny. Cancer is a mean wicked bitch … and treatment is hard. If everyone knew ahead of time what they were about to go through; patients would be scared to death right out of the gate. My oncologist originally told me that she was not going to tell me everything that may or could happen so not to scare me in any way.

 

But here I am "EVOLVING" from what I survived. Things I have gone through all my life are now crystal clear and I made the conscious choice to do what is best for me and my peace going forward. I have to do what is best for me and me alone. If I don't take care of myself … no one else will. I am finding my own happiness, my own bliss. Living my life by my own terms, and by my own choices. I have wasted too much time carrying around not only my own baggage of the past but other individuals baggage as well. Time to let it all go, finally move past it. So far I can feel the difference in my life, how some things don't seem so impossible, so negative, or even tragic.

 

No, I haven't had an easy life; but others have also experienced their struggles or their demons in life. The saying "everyone is going through something" is one that I realize clearer now. Because it is true, you can't always tell what someone is going through by how they look on the outside. Emotional scars aren't visible. Pain whether chronic or otherwise is not always visible. I've learned to have empathy for others for that reason. You don't know what horrible hell someone beside you may be going through, give them grace. Something that I didn't always get and wished I would have gotten more of; but also something I will ensure I will extend to others because I understand.

 

Now I have the decisions moving forward with how I am going to help give back to others now experiencing what I have already walked the path with. What will that look like going forward and to what extent. To be able to help others navigate this journey in hopes of making it easier on them is very important to me. I went through treatment with no help or assistance, no therapy, no support groups, no one to really lean on that understood what I was going through until much later in my recovery. What I can not only contribute to the cancer community but also get back will be life changing at the end of the day. That is what matters, what is important, and what is necessary.

 

 

Let Freedom Ring !!!!!

 

I am born and bred here in Southwestern Pennsylvania where the land is rich in history. Being able to have the ability to visit sites where those who fought for our freedom, to walk on the same land; is something I love about Southwestern PA. To see what our founding fathers accomplished all those years ago to have the land of opportunity we have today ... I get chills. Fireworks on the 4th bring me to tears reminding me of how patriotic our family is and how proud we are of that. My father (when he was alive), fought in the Korean War. We (my husband and I) always make a point when we see a servicemember out in public to thank them for their service. 

250 years of freedom !!!  Happy 4th of July !!!

Things on my mind ...

I woke up today with all this "stuff" on my mind. I tried to brush it off, but then I thought "let's put this down in our journal." I didn't think it was going to be this much but once I started writing it just poured out. Blogging or journaling is a part of my healing process. It's like here are your fears, let's write about them in hopes that they no longer weigh us down. So this is literally the first thing on my mind today before I did any of my daily tasks. I needed to "vent" so to speak. Not in a bad way, just a general way. More and more when I start looking at my journaling I realize I really need to write that book !!!

......

I woke up today and started thinking about where I was, where I am, and where I want to be. The decisions you make in life are made in the season you are in. The decisions I make today are where I am in this present moment. One thing I learned as a cancer survivor is that you live in the moment, appreciate every day, and try not to look to far ahead. That fear is always there that the cancer would return and I would have to live this nightmare all over again. As the days have passed since January of 2025 when I was once again declared cancer free there are days when I don't think about the fear as much as I thought I would. It does take time, just like hair growth after chemotherapy … those hairs don't grow back overnight. I have tried to use that analogy with all other situations I am currently going through as I navigate this new normal in my life. Nothing happens overnight … things take time, healing takes time.

 

It is wonderful and a blessing to still be here and be able to even think about the future and goals and things I want to check off my bucket list without a time limit. Goals are a positive, but sometimes they can be a negative. What I mean by that is if you set unrealistic time on your goals, when those goals aren't achieved in that time frame you can become discouraged, have a setback in all you have achieved to this point. No one has all the answers all the time. There is no book or instruction manual to help you navigate life after cancer. Not even the good book … as much comfort that reading and studying the bible can bring; it unfortunately can't give you step-by-step instructions on how to move forward after a traumatic event in your life. I look at it this way; it's a guide … it can inspire you to find what works for you and help set you on the correct path. What works for one does not work for all unfortunately. Each cancer survivor walks their own walk on a path to healing and what many view as a normal life.

 

What is discouraging for many survivors in the beginning of their healing journey is realizing nothing will be what it once was. That person that you were … you will never be again. The words cancer, chemo, radiation, surgeries, etc. … they change you not only on the outside but the inside as well. When you are going through it there is also pure clarity. You see who steps up and who doesn't, who supports you and who doesn't. You appreciate little moments and find that stressing over little things just aren't worth it. I remember back to a time when I was smack dab in the middle of chemotherapy treatments and I was able to actually enjoy a meal. Many times you lose your appetite and your sense of taste. But the day you bite into that cheeseburger and you can actually taste it and enjoy it is one of those little moments I appreciated along the way. The day my hair got long enough to pull back into a ponytail; I thought that day would never come. Losing your hair is both a blessing and a curse … when you have no hair you can get ready to roll out the door in no time. You just pop on a wig or a bandana and that is it. No hairspray, no messing with it. It is nice though to be where I am right now, to fix my hair in the morning. I always pull my hair back in a ponytail. Some people hate it … they ask me to "fix" my hair. What they don't realize is that being able to pull my hair back is the one bit of normalcy I had back then that I have back now. It's not about the bigger picture, it is about what brings me joy.

 

I no longer care about what others think. That is another thing that survivorship gives you. You put yourself first. I live my life the way I want to, I march to my own beat. What I went through, what I survived … I physically can't worry about materialistic or unrealistic things that don't benefit me. Guess what, me and that ponytail - we are here to stay. I could care less what others do, how they "wear" their hair, what they dress in, etc. No one should really care what I do, or at least that is the way it should be. There are many times when you are going through cancer and you have to find those little glimmers of joy or create some for yourself. Cancer is a lonely fight, even for those who have others around them for support. Now there is a saying that "it takes a village". Yes, that is true, but sometimes (many times) there are those lonely moments. Now, I am not talking about how I used to be unable to sleep at night, how insomnia took over my life and I ended up crying on the toilet at 3 in the morning. Just the moments you sit alone, those moments when it is just you and your thoughts. There were moments I sat in a busy Oncology center surrounded by nurses, caregivers, and other cancer patients and still felt completely alone. You are physically there in your body, but in your mind it's just you and your thoughts, your memories, your fears, and sometimes your tears.

 

I have been reflecting back lately looking on where I was three years ago, and where I am today … and that did not happen overnight. You can't skip steps along the journey, no shortcuts; you have to walk the entire path. Trust me there have been some steps along the way that have totally sucked; but they were necessary. And every step, big or small; brings you to where you are. So those goals that I really can't put a timeframe on, we'll just tuck them away in the bucket list. We will get there hopefully someday, but for now we have to be realistic in where we are and what we can achieve.

 

Nothing is impossible … if I have survived the ups and downs on the last three years; I can survive anything. There is nothing I can't do (besides grow back breasts). I will never know why this happened, I will never understand where the turning point was that completely sidetracked my life. If I did something wrong or was it just genetics, chance, or just given to me because God knew I could handle it. I have a greater understanding and more empathy that there are others out there going through things we know nothing about. You can't see someone's pain just by looking at them. There are some ailments that are invisible to the eye, but for those suffering from it … a part of their daily lives. Everyone has a story, mine is quite a rollercoaster but I held on tight and survived the ride. There were moments I thought I would not survive it or have a future; so now that I do; I appreciate each moment I get to have. And it is okay to have goals and dreams, those things help keep us going. Cancer can take your hair, your breasts, who you once were … but it can NOT take your dreams from you or the desire to be a better and new you. 😉

In a Disney state of mind

 Yesterday I was watching some live streaming and got to hear the opening of EPCOT. It was Walt's voice and it got me thinking ... what would he think of Disney today? What would he have thought about EPCOT, Holllywood, Studios, and Animal Kingdom all things he never got to see. And I started thinking back to watching the Imagineering special on Disney + and how after his death the imagineers seemed to follow in his footsteps what he wanted to achieve in the parks. I do believe there are some decisions that were made that he wouldn't have necessarily agreed with, but those decisions were made for the better of the park and the experience it brought families.

When you start thinking of how it all started and what it grew into it is absolutely incredible. Parks all over the world, the partnerships made with the star wars franchise, Marvel, and even the Pixar period. How incredible it all was that how those decisions brought newer genres to the park, people who wouldn't have necessarily called themselves "disney people" who are now proud "disney adults". 

I experienced my first trip to Disneyworld in 1983. EPCOT was still being built and we could see the construction of Spaceship Earth from my hotel window. We were staying at a hotel near Disney Springs which back then was known as Downtown Disney. I was only 14 years old and my sister 11. We had just lost our father the year before and our Mom, Gram, Aunt, and cousin accompanied us on the trip. Only years later I thought to myself how much my Dad would have loved going there. He would have acted like he didn't but I knew he was always a big kid at heart. 

We traveled back to Disneyworld four more times after that: 2008, 2010, 2012, and 2016. I know me personally I am well overdue for another trip. We are hopefully going to make it there next summer for a family vacation. I have already opted to only eat PB&J sandwhiches the whole time just to make it there. For me this trip will be extra special. 

After battling cancer for 3 years there was a time during that where I felt I would never walk down Main Street again. I would never experience that "disney magic" again. Some people don't get the whole "disney state of mind" but that is because they have forgotten to feel like a kid. Back when life was simple and the little things in life brought you joy.

Now, I know ... this next time I walk onto Main Street and look at that Castle in the distance tears will probably run down my face. But those tears will be tears of joy. Everything in my life after this battle has been different. The one thing that has stayed the same is my love for Disney. It is a place to forget about the day to day problems and the stresses of being an adult. Disney is for kids of all ages ... and this kid can't wait to visit the happiest place on earth and celebrate life. In a way, that is something that Walt wanted for everyone.