So, you have been told, you have cancer.It’s awful and scary. It seems like the world just stopped and there’s nothing you can do. There are resources out there. There are communities and support. There are so many others, out there, trying to fight, the same fight. So, what does that exactly mean for you? Where do you go, for answers? Where is support? There are so many questions. There are a million different answers.
I can tell you what I did and where I am today. When I was first diagnosed with skin cancer, I spent days and weeks, searching for answers. I remember those words ringing in my head, what seemed like, forever. It was almost like a book I was reading, but me as the main character. It never really felt real!! But here I was, a cancer patient. It was 2006, I felt there were no answers, to be had. Every oncologist we went and we searched for weeks, told me I would spend month or so in the hospital, using chemotherapy, called Interferon. I was terrified at the thought, the name even scared me but most of all, my girls were to young, to be away from me. At that time, I had a 3 week old new born and a kindergartner. Nothing was going to take me away from them that long. We, being my husband and family, kept searching. calling the top oncologist we could, meeting them, we even thought about going to Mexico for stem cell transplant. It just felt like there was NO HOPE!.
Luckily that changed, our determination to find a better chance, of just surviving, (less than 5% chance to make it, 5 years) became our goal. My father in law, had done some medical issues, done at The Mayo Clinic, here in Arizona. Making an appointment there, was difficult but my husband wasn’t going to accept no for an answer. He wrote them a letter and we called many times to get in, they are the #1 rated hospital, here in Arizona. This was our best chance, we needed to get in. You had to apply for an appointment!! It felt so strange, really, as I had always hoped I be applying for a nursing school, instead I was applying for someone to save my life. That’s really heavy, when you say that out loud. We eventually got a response and an appointment with an incredible, Oncologist. .
[journal entry]
“My daughter, was just three years old. It was 2006, had I known then, where I would be now…I would’ve done removed the mole sooner. Instead, I waited until it was uncomfortable for me to have it on my arm. This small mole, looked harmless, but looks are very deceiving. Instead I enjoyed my life and as it grew and my life was growing in the best way possible! In 2004, we moved into our first, brand new home. I was so excited to get married to the man of my dreams. My life was just beginning! I was living my life snd I ignored that little thing on my arm. not knowing it was a ticking time bomb and it was about to explode, our lives. I was married in Maui of 2005, magical beach wedding. That small mole, showed in photos, it was standing out and I couldn’t ignore it any longer. I didn’t even know, I know anything about skin cancer, or melanoma…I didn’t know what was growing on me. It started to itch & bleed, it was telling me that I couldn’t wait any longer. Life had other plans for me. So, I removed it! Wide excision (WLE), they called it, it looked like an eye shaped wound. He said maybe skin cancer, but that’s just on the skin…so “I’m fine”!
I was informed, over the phone, three weeks later that I had melanoma, the deadliest form of skin cancer. I didn’t know what that meant, but I knew, I was about to start something scary! I cried for what felt like days but it was just short mins. time stood still, luckily my dad happen to be here with me when the doctor called. He held me and said, “Katie it’s going to be fine, I’m so sorry honey”. I wanted to believe him but his heart was pounding in my ear, it sounded like loudest drums i’d ever heard. As my tears came flowing down my face, I knew that it wasn’t the case. We had no clue, what to do but stand there and cry!”
Cancer may have started this but YOU can finish!
What now?
- Stay off the the large SEARCH engines, for your cancer guide help, it will only scare you
- You do need to use it for researching, the best oncologist near you, Staying close to home, is a good plan to look into, makes it easier if you need treatment.
- Write down all the questions you want answered, for your first appointment. I suggest finding a notebook or a journal. Keeping organized is key.
- Getting a copy of all your medical records, scans and paperwork and keep it together. That is your holy grail, you will reference it many times. I used binders and organized mine, with dividers. Still use this method today. Refer back to them often. I have everything printed out. I request this, after every appt.
- Bring a loved one with you to the appointment, you will need the support and two minds retaining the info is better than one.
- You can record on your voice memos of your phone, just info those in the room first.
- Bring any imaging, you may have taken, if you were seen at previous doctor. This will include your dermatologist.
- Ask about all your treatment option, including clinical trials and therapy.
- Getting more than one opinion, is smart. You want to know ALL your options.
- Be aware of your insurance coverage, this is very important. You do not want to be out of net work, you’ll end up spending more money. could end up in a battle to get appointments covered (been down that road, its awful).
- Find a community that pertains to you, your cancer. Look into cancer support groups or a therapist. MOST IMPORTANTLY, YOU ARE NOT ALONE. There are so many communities, on social media, to belong to. People who understand you and will support you.
- Lean on your loved ones, you can’t protect them from this. They want to help you. Your family and friends, feel just as helpless in these beginning months. Supporting you, is therapeutic for them.
Questions to Ask After Being Diagnosed With Melanoma
- What type or subtype of melanoma do I have?
- What stage is my melanoma?
- How did you determine that?
- What is the depth of the melanoma in millimeters?
- Is the melanoma ulcerated?
- Is it likely that the melanoma has spread? Why or why not?
- What is my prognosis?
- What is the next step for me?
*according to aimatmelanoma.org these are some questions, you may want to consider asking your doctor.*
HOPE IS NOT LOST. THERE ARE SO MANY OF US, FIGHTING THE SAME BATTLE, ACROSS THE WORLD OR RIGHT NEXT DOOR. TOGETHER WE ARE STRONGER. YOU ARE NOT ALONE. @STOPMELANOMAMOVEMENT