Two years ago, I fell to the floor unable to physically pick myself up, unable to stop my tears from pouring down my face and unable to stop my heart from pounding. Two years ago today I went to bed praying I would wake the next morning and see my kids. Two years ago today I learned I had eyeball cancer.
I am not one to celebrate something sad or bad SO today….Two years later I celebrate how much I have grown, accomplished and changed. The past two years I did my best and did as my grandma told me, “You have no choice – so do what you need to do.” I did just that and two years later realized I accomplished a lot personally. I managed the valleys and enjoyed the peaks. I also realized along my journey I was being my own self advocate – And being a self-advocate has led to some special opportunities and events so far in 2019.
First, the beginning of March I joined the Melanoma Research Foundation (MRF) at their 9th Annual Advocacy Summit and Hill Day. This event brings together a national community (over 30 states) of patients, caregivers and healthcare providers to be a united voice for the over one million Americans living with Melanoma. During the event, I was asked to speak on a panel “The importance of the patient voice: Navigating your way from diagnosis to survivorship” where I shared my story and how I have been a self advocate along my journey. (I will share some of my thoughts later in this post). I was honored to be asked to speak on the panel. Later, as a melanoma community we learned more about advocacy and how to take action, the state of Melanoma research and science and learned more about federal legislative priorities and funding opportunities from the Department of Defense (DOD), National Institute of Health (NIH) and National Cancer Institute (NCI). I then joined other Colorado Melanoma survivors where we met with Colorado State Representatives and Senators Legislative Assistants and Policy Advisors to share our personal journey with Melanoma and why it’s important to support this disease – supporting melanoma research, support rare diseases (like OM), prevention activities, and support proposals that promote access to care. It was an unbelievable experience walking Capital Hill and having our voices be heard. I hope to make this an annual event in my life – encouraging others I have met in the Melanoma community to join me as well.
Second, this May, I will be receiving the Courage Award from the Melanoma Research Foundation (MRF) at the MRF’s Annual Fundraising Gala, Wings of Hope, in Denver. The event celebrates leaders in the medical field, recognizes courageous individuals who are battling melanoma and shares some of the exciting medical breakthroughs that are on the horizon. I am beyond humbled and honored to receive this award. Another award being presented is the CURE OM Vision of Hope. The recipient of this award is Amanda Mason. Amanda has been along my side fighting for me and guiding me both medically and emotionally since day one. Because of Amanda’s impact on her patients’ lives and the medical community, I am beyond excited to celebrate her as well.
I have an unknown road ahead but tonight I am celebrating my 2 years! You don’t get to pick the cards your dealt….I sure as hell did not pick the ‘eyeball’ cancer card BUT since it’s the hand I am holding I am DETERMINED to rattle the dealer as I am not folding!
Below are some of my thoughts I prepared and shared during my panel “The importance of the patient voice: Navigating your way from diagnosis to survivorship” My hope in sharing the below is to ensure someone’s journey can be a little easier, easier in having a say in your healthcare decisions and taking care of your own well being.
Effective ways to have a say in your healthcare:
#1 – Find the right care team for YOU – From the beginning I asked my doctors what their goals were. Did they complement my goals to fight this cancer? Were they going to fight with me and for me?
The first medical oncologist I met left me feeling unsettled. I prepared and asked several questions and didn’t get the ‘I am going to conquer this disease feeling’. I expected to have someone who was going to be proactive in my fight and I was not satisfied in her responses SO I continued my search. The next and my current oncologist’s goal is to find a cure for OM in his lifetime. He has an answer to my questions or has research to support his ideas and next steps. He allows me to ask my millions of questions and fights insurance for what I need. He is always proactive to ensure I am on the up and up based on his research and communication with other doctors in the OM field. He fights for me.
#2 Once you find the right care team for YOU (Right now my care team consist of 5 expert/docs and their teams: PCP, dermatologist, ocular oncologist, ocular plastic, medical oncologist.)
- Ask who you can contact for questions and concerns – ask for a specific name, phone number or email. Also, ask their response time frame. This helped me manage my expectations. Was I going to hear back from my contact the same day if I emailed, during that week? The waiting game is the worse so knowing when to expect replies helped me breathe.
- Create an account on the patient portal – Here you can get doctors notes, test results, and upcoming appointments. I sometimes read my lab reports and scans (the best I can) and then have questions prepared to ask. I trust my care team but I like reading and seeing the results for myself as well. This also helped when I was sending scans and labs to my doctors out of state. I could download my information and send directly.
- Stay on top of doctor communication – There was a point I had 2 docs in CO, one in CA and one in NY. There were labs, scans and biopsies being sent across the country and I ensured through phone calls and emails what the doctor was expecting was getting in their hands.
- Ask your care team where and how to research. If you research my dx, it says I would have been dead by now so don’t go rouge online☹ Ask your team the best websites to learn about your dx, treatment options and support groups. Ask for foundations to support in funding meds, & medical bills. What support programs are out there – social media, local community support, online webinars, etc. What support groups do they recommend based on your age, lifestyle and personality. I wanted to meet young adults, young parents, individuals who are honest/real yet positive and have an active life style.
- Ask your team the questions you have learned/heard from others and how they will impact you. I always asked best case and worse case. Through most of the past 2 years each part of my journey was worst case, I was rare of the rare….Knowing the worst case provided me time to process and prepare BUT not dwelling and always being positive and being around positive people.
- Take family, take your kids to doc appointments (not always but sometimes I did not have a choice) – you are not just a cancer patient. You’re a wife, a mom, a friend who needs a care team to do everything they can to fight with you. Let your care team see who you really are beyond the patient chair.
- Share your personality, who you are as a person – I can/will travel if needed to get the best care, I will do clinical trials if needed, I have severe scanixety – how can I get my results asap – who will be contacting me. What activities can/can’t I do.
Important first steps to being a self-advocate: Learn how and know when to ask for help. Get your mental health in order! The emotions and feelings are far worse than the physical pain and I needed to be present and continue to live – sometimes getting through a day was almost impossible.
- After sharing my concerns with Amanda (my OM patient advocate) and my PCP I got anxiety meds to take when my heart would not stop pounding, before scans or when the days seemed unmanageable.
- I asked a friend for a counselor recommendations – someone to talk to and learn how to get through a day. How to talk to my kids.
- Who is going to go to my doc appointments with me, sit in the oncology lab waiting room (that’s a hard place to be alone), and hug me when my scan was over and wait for the news. At first, I always had someone and then went a few times on my own to labs, scans and doc appts. I realized my anxiety was so high, I was in a bad place before, during and after. I learned to ask for help for someone to join me at all appointments big or small. Paul was usually my person OR my parents, grandma and we would review questions ahead of time and my caregivers may have other questions too. Who is taking notes, who is holding your hand – so you can cry and go numb if needed.
- I scheduled medicupping massages – this was my way to releasing my negative thoughts, tension.
- Learning to say no, my plate is full
- People ask how they can help SO tell them what you need – let them help.
- Let people into your journey – People care and want to know your journey – want updates. For OM patients…it’s not every day your friend has their eye removed so others are interested in learning your journey and want to help. For me it was text and email updates but then turned to blogging.
- Social media – joining for support but know when to remove yourself – when I felt my mood changing, when I would not leave my bedroom, when I was not living my life and being present with my kids it was time to remove myself.
Ultimately there is no handbook to self-advocacy but you are fighting for your life so follow your gut and keep going, keep fighting until you have whole team fighting with you, for you.
#mrscaptainron #youcantakemysightbutyoucanttakemyvision #FUOM #seriouslyFUOM #MRFAdvocate #GETNAKED #EyeGetDilated