For Metastatic Breast Cancer Awareness Day, on October 13th, I wanted to create an informative video that would allow fellow stage IV survivors let the public know what stage IV breast cancer is all about. I have been quite ill for the past month or so from my treatments and a cold I was fighting, but I really wanted to do something for metastatic breast cancer for the month of October.
I was diagnosed with stage IV breast cancer in 2010 when I was only 28 years old, so the traditional mammogram screenings women get at 40 on did not help me, it was already too late and my cancer had spread to my liver and spine. This unfortunately happens a lot to survivors under 40, or to survivors without health insurance.
Breast Cancer Awareness month has turned into a pink party of people sharing stories of triumph over breast cancer. You’ll see characters on your favorite tv shows go through chemo over a couple episodes and then they are cured. It’s not too often that you hear the not so pink stories of young women or men struggling day in and day out with stage IV breast cancer. The question I get a lot is “How long will you be on this chemo?” The answer is sadly that I will be on it till my body can’t handle it anymore or till my cancer grows, then I will be put on a different chemo or targeted therapy till the day I run out of options and have to let the cancer take over.
I thought that the best way to educate everyone on the importance of stage IV research funding was to have some of my fellow stage IV survivor friends send me videos that I could edit together to get the message across that we need YOUR help to change the numbers. We need people to know that 3 out of 10 early stage breast cancer survivors will one day progress to stage IV and that 10% of us are diagnosed stage IV from the beginning like I was. There are a lot of survivors out there that believe that they have beaten this disease and think that once their treatments are over that they are good to go. In all actuality it does not matter if you were diagnosed with stage 0, stage I, or stage II, there is always a change that it will come back.
Another misconception is that people think they are only susceptible if they have a family history or that gene mutation that Angelina Jolie had. This is also not true. I had neither of the above and still developed breast cancer in my late twenties.
What is it like having metastatic breast cancer?
It’s a balancing act. I have both good days and bad days. I have had over 5 painful surgeries, radiation to my chest and spine that landed me in a burn clinic, I have been on over 6 different chemo regimens over the past four and a half years. I spend way too much time in the hospital. I have experienced moderate liver failure due to my cancer pinching my common bile duct closed, and the procedure to fix it caused me to have pancreatitis which has still not fully healed and has caused me to loose over 65 pounds since this past May. I have to eat a low fat diet to avoid the pain in my pancreas and the bouts of vomiting up bile. I have a grocery bag full of medications to take to offset side effects from my treatments, and my immune system is so low that a common cold will put me out of commission for months.
This is what having stage IV breast cancer can look like.
I have to run to the ER every time my temp reaches over 100.1. A little insect bite or scratch can turn into an infection and land me in the ER on IV antibiotics. The current chemo I am on has caused me to loose feeling in my hands and feet making it difficult to button things or walk up stairs. All of this and I am only 33 years old with a 13 year old son.
Granted my quality of life has changed drastically over the years, however I am not looking for pity. I am just looking to educate people on what breast cancer can truly look like. I have embraced my new life with cancer and made it my goal to make a difference. Though we might not find a cure in my lifetime I know we will someday so men and women do not have to go through what I have.
I hope that you take a chance to watch the video that I created with the help of my fellow metastatic survivor friends. It would mean the world to me if you could take 2 minutes to watch it, donate $5 if you have it, and tag or send the video to 5 more friends. By doing this YOU yourself could save a life, you could educate someone to be more cautious about getting checked and re-checked for breast cancer. You could educate men that they too can get breast cancer, or young women under 40. I wish this disease on no one, and by spreading this video we will make it known that Stage IV breast cancer needs to be taken more seriously. We need to make people know that not every breast cancer charity is actually trying to find a true cure, and that buying something pink is not necessarily helping us in the long run.
Our grass roots organization Beyond Stage 4 is 100% volunteer run. This means that we all work out of the goodness of our hearts with no compensation. This allows us to use 100% of the funds we raise to make a true difference. No we do not have a huge marketing budget to compete with the larger org’s out there, we have me a New Media graduate living with stage IV. I design our shirts, our site, our graphics, edit our videos, and I do all of this to make sure we can put all of our funds to the cause. 90% of the funds raised by our October fundraisers will be being donated to our sister org METAvivor, who is also a volunteer run nonprofit that puts 100% of their funds towards Metastatic Breast Cancer Research. The other 10% will be going to Beyond Stage 4 so we can continue to fundraise and educate the world. But in order to be successful we need your support!
I pray that you can not buy that latte today and donate just $5 to make a difference. If you can not then please email or share this video to at least 5 other people. Though the money is great it is not all about the donations it is also about educating people about metastatic breast cancer. Thanks you so much for listening to my story.