Eight Years

Eight. I didn’t even think about that number. I was just going through the motions- taking it day by day- just focusing on getting and FEELING better. Each year since I was diagnosed with Brain Cancer I celebrate each moment, each day and yes every year. We celebrate on the day my life was saved- the day of my surgery. Some people celebrate on the day that their cancer is cured but since that hasn’t happened for me YET I choose to celebrate differently. I’m happy with my choice. I am so grateful I was saved. Am I happy that I still have cancer? Well, not exactly but I try very hard not to focus on that part and focus on all the positive things in my life.


This past year was a little different. I have had some setbacks along my journey but in November of 2020 I learned that my cancer had cancer had come back. It was new and in new areas. This time around I had some new doctors and since we were in the middle of the COVID pandemic procedures were different. My husband couldn’t always accompany me. Honestly I wasn’t my “positive” self. I wish I could lie to you but the whole ordeal from the biopsy to the radiation was terrible. My recovery was long and my attitude was very negative. I couldn’t read, watch TV, work, walk on my own or barely talk to my family. So- what now?


I knew I needed to get out of this slump- right away. My theory is that positivity has always been what helped saved my life but how would I get from this to there? I didn’t want to listen to anyone else (I can be a bit stubborn) so I had to do this on my own. I needed to close my eyes and just listen. My body was fighting my new medication and making me sick so I told my doctors that I needed to cut back. So we did. I started to be honest with my those closest to me about how I was REALLY feeling. I realized that I was trying so hard to be positive FOR them but I wasn’t being honest with myself. Once I did that things slowly started to get better.


When I’m at the hospital and I see others who are sick, especially when they have brain cancer, I feel so badly for THEM. Whatever is going on with me gets put on the back burner. Whether it’s a child or an adult- it makes me so angry that this disease has no cure. When I get angry it makes me want to fight. So I feel stronger. I am currently in the middle of fighting off these three new buggers so I need ALL my strength and positivity.

Now here I am- 8 years later, still here and still fighting. Maybe I will get knocked down and it will be tough but I WILL get back up. I will NEVER GIVE UP.

Thank you for reading.

THE REBUILD

THErebuild-SRwords and image of the barn at central by sandie rossini

Every once and awhile you need to take a step back and look at the important things in your life and perhaps do some repair- for example your career, relationships, even your wardrobe, or perhaps to your home. Whether you choose to view those items as significant is up to you. In my opinion- they’re all quite significant. Changing your career is difficult or it can be exciting, scary but exactly what you need to finally be happy. Choosing to rebuild a relationship with someone is huge and a challenge, if you’re willing to go through with it. Your wardrobe- that’s your style and it speaks to who you are as an individual. Then lastly- your home, well I hear that can be extremely stressful. Wait- I just did this! Let me tell you a little story…

One day, a very long long time ago…or sometime last year, we decided to put an addition onto our home. Our house was small for 2 adults, 2 growing teenage girls and 3 dogs. The bedrooms were very small, and we only had 1 full bathroom with very small closets and no storage space- we needed storage space. I was renting storage for my business and my office was in the middle of our family room. I won’t continue to bore you with the details but trust me-we needed MORE SPACE. So off we went- to the bank then permits, contractors, quotes….you’re hired! Great. We’re only doing adding to one part of the house- so we’ll just stay here- we said, no problem…?

First step to our rebuild- you gotta tear it down to build it back up. It went down fast and then it went up fast too, kinda. Great! It was summer time and all the workers were at the house bright and early and I was impressed. They were framing, building, we got a new roof, new siding on the house, more new windows, a new garage, new bathrooms, new toilets- we were picking everything out, then putting things back (we were trying to save money)…meanwhile we were all living in one room in the house. All of us, including the dogs and all of our stuff- and we had a lot of stuff. Summer turned to fall and eventually to winter and things got cold- did I mention we had no heat? That’s OK, we have blankets and each other, I felt blessed.

Now a lot of people were asking me- how are doing you this? How can you stand living in the middle of construction, with no heat? I said the following- I’ve been through worse. Plus, WE did this. We asked for this. This wasn’t a natural disaster where didn’t have a choice- this was OUR choice. All of this was a good thing, this was an addition to our home, it felt like a luxury. We not only have a roof over our heads- we’re adding to it. Sure, at times it might have been a little tough but nothing I personally couldn’t handle. We had each other. I still get to wake up every single every day and I will never complain about that. This was our rebuild.

In the Thick of It

ThickofItwords & image by sandie rossini: march, 2016

Survival. Sometimes you have to really fight for your life. You have to get through some really bad days to get to the good ones. The hardest part was supposed to be over, so why was I feeling so terrible? My migraines were worse than ever, and I could barely get out of bed- this wasn’t me. I wanted to get back to “Sandie Strong”- the one that everyone was complimenting on being courageous, the one that everyone was “amazed” about how great I was doing, the one that was speaking about how to survive stage 4 Glioblastoma, how to be “Invincible”…but I couldn’t. I just wanted to go back to bed. I just wanted to hide. The pain in my head was too much to bare. It wasn’t my cancer; my recent MRI’s hadn’t shown any new growth- it was my migraines. My migraines were something that had haunted me for a very long time and they were currently making me very sick. Then I suffered a setback and that setback was in the form of a seizure which turned into a trip to the ER and then a stay in the hospital. I was in the thick of it. This time was different though. I felt TERRIBLE and I knew I had to get through a few REALLY BAD days but then there was a solution. A change in medication and a NEW positive attitude was what I needed. I had fallen into a bit of a rut and it had landed me there- back in the hospital. I wasn’t going to let this bring me down. I had setbacks before and this one was scary but not enough to break me. NOTHING was big enough to break me. I could see what was waiting for me-I had a TON of hope and a whole lot of faith. So yes, I needed to get through some not so great days but then I was going to come out EVEN better and stronger on the other side. I could see it, clearly.

Stubborn

Cornfieldwords & image by sandie rossini: january 12, 2015

What if I told you that your destiny was decided at the moment of your creation? Your genetic makeup is created at fertilization and that includes things like your strongest personality trait. Of course our environment shapes our personality and who we will become but if we really are WHO WE ARE from the moment we are created- that is amazing. Where is this coming from? Well, I once saw a National Geographic documentary called “In the Womb” that said you get your strongest personality trait at the moment of conception. Things change depending on who raises you and where you live but despite all of that your strongest trait remains. Then I wondered about my strongest personality trait- well, most people would say that I am and always have been stubborn. Well, ok, I suppose I can admit (stubbornly) that at times I can be a little stubborn in just about everything I do in life. 😊 Here’s an example, I even refuse to believe I have cancer at times, but it’s that belief that actually keeps me going. I believe that I will survive and that someday I WILL BE CANCER-FREE. Wouldn’t it be amazing if my very first personality trait at the beginning of my existence ends up saving my life? Imagine that…I do.

I’m Not a Statistic

NaplesSUNSET(words & image by sandie rossini)

You should always get a second opinion. I suppose that’s true. My gut is usually right but I do like to hear other opinions when it comes to… basically anything. That was most definitely true when it came to choosing my doctor and the hospital where I would be receiving my chemotherapy and radiation treatment following my surgery. I probably wasn’t thinking clearly, I mean I just had BRAIN surgery after all so I took the advice of my family members and went to the hospital just across the street from where I had my surgery and saw another doctor. The two hospitals were actually connected and shared information and research but it felt like I was entering a different planet. It didn’t help that I felt horrible that day. I was still recovering from surgery and I had a painful, throbbing headache that made it hard to see. I felt nauseous and couldn’t eat and I also was too weak to walk so I sat in a wheelchair. I was angry, very angry. As I sat in a torture chamber I was forced to listen to a screeching loud noise that sounded like someone’s nails on a chalkboard. I was then wheeled down a dark corridor and forced to wait for hours and had to listen to loud clicking noises and had to answer endless questions. After that I was then wheeled into a small room and surrounded by many men who then asked me more questions, which I was forced to answer. Then we waited, and we waited for an hour and then another hour. I demanded that someone wheel me out of the room but no one would. I had enough. I had made up my mind before we even met the doctor but I tried to give this place a chance but I was done, I couldn’t take another second of- then suddenly the doctor walked in casually. So I stopped my negative thinking. I gave him a clean slate. I began to understand that the screeching noise in the lobby may have been a young lady playing a harp to relax patients, the questions were probably reasonable and the clicking was most likely keyboards, my anger was most likely caused by the steroids that I was on to heal the swelling in my brain, the headaches and pain- well that was from my surgery and I shouldn’t be taking it out on this hospital that didn’t seem so dark now that I looked around. So I took a deep breath and said hello and shook this doctor’s hand. Unfortunately, he blew it. He began with the “at the most 5 years” speech and that’s when he lost me. That’s not what I wanted in a doctor. You see MY doctor needed to understand that I am NOT a statistic and that I was going to BEAT the odds. So yes, use your numbers, get the facts, do the math, the science and get me the best treatment out there but understand this- don’t ever tell me how long I will live because YOU sir, do not know that information. No one knows that. The doctor I chose- was my doctor from the start. I had a team of doctors at Beth Israel Deaconess Medical Center in Boston, MA. My surgeon was a superhero who performed a miracle & removed the monster in my head, my Radiologist beamed positivity into my soul and my Oncologist is brilliant & continues to shield me from the evil of cancer to this day- and I can tell you that I’m positive I made the right choice. My doctor has always told me that I am NOT a statistic.

Scars

FarmTunnelby sandie rossini: 11.19.2014

We all have scars. Some are visible to the world, some are internal. My biggest scar is one and the same. I have a large scar starting from my forehead across my head, it’s from my brain surgery. It’s a daily reminder of what I’ve been through over the past year and a half. Not that I need to be reminded, my surgery and cancer is something I can’t forget, no matter how much I try. Most of the time I wish I could forget and there are times that I do but then something happens- like I hear the news in the other room saying someone has died of brain cancer and it makes me feel like I’ve been punched in the stomach. It makes me feel dizzy, off balance, like my world is being turned upside down…but only for a moment. Somehow I have learned to right myself. Some people ask me- how do you stay positive? My first answer is faith. Secondly, I ask- what’s my alternative? The scary negative thoughts are just that- scary. I can’t live in fear everyday and I won’t.