When I look at the number above, at first glance it does not seem like much, but when I truly think about this number it seems huge. I have now been living with Stage 4 Breast Cancer for 2,190 days (6 years). It seems like an eternity. Almost now to the point where I almost do not remember who I was six years ago. My kids have now been living with their mom having cancer for more than half of their lives. Some days have been ok, some days have been harder than anyone could ever imagine and every day has had the weight of this reality bogging it down. The last 365 (give or take a few) have been by the far the hardest.
In the last year I have been put through the wringer. I have been on 4 different treatments and have had every side effect that could have been possible…..and then some. Sometimes when I am the doctors office or more so on a recent trip to the ER the nurses and doctors look at me like I am some sort of alien. Reading my charts wondering how in the hell I am still here. Everyday I ask myself the same question. How am I still here and why do I have to suffer so much?
In the last year I have lost my ability to work as this cancer has become a full time job. I loved my job and the people I worked with. I tried my hardest to try to go back to work but cancer had another plan and gave me hurdle after hurdle to deal with. Since out of work I have had to spend hours and hours on the phone with the state and social security trying to prove to them just how sick I am. The system is so backwards and if I felt that I had a lot of life left in front of me, I would make it my mission to try to help sick people with this process. I am lucky and thankful that my loss of income was not a huge burden but for most it would be and a sick person should not have to go through what I did just to get what they deserve.
The last year has completely depleted me in so many ways. Some tough conversations were had but I am not completely ready to throw in the towel yet. Today, I feel ok. The current treatment that I am on has been fairly easy on me. Ironically the “ease” of this medicine most likely means that it is not working. All of my current labs also are pointing in the direction that this treatment is not working. My current tumor markers are the highest they have ever been and my liver enzymes are heightened as well. But right now, I do not care. I have asked to be blissfully ignorant right now in regards to my cancer. My dr. doesn’t love this approach but has agreed to give me one more month on this treatment. I ask for this approach because I cannot remember the last time in the past six years that I have felt as “good” as I do right now. Reality is that I will most likely never feel this “good” ever again in my life. I will have scans early May. If the scans are good- amazing and I will embrace the miracle. If the scans are not good (which I am prepared for) I will not start any new treatment until June. I have a very important trip to Portugal that I have been talking about doing for years and I want to feel my best for! Right now I am trying to live as much life as I can as I feel like things are going to start to change for me when/if I start a new treatment.
Having end stage cancer for 6 years you learn a lot. Here are some of the things …..from a dying woman’s perspective……that I think are most important:
- This world is cruel and as I look at how some of the young people today act I think it is just getting tougher. I have learned that while I teach my kids to be kind and always treat people as they would want to be treated…….there comes a point where the niceness has to end and you just have to tell some people to Fuck off!!! My kids loved this new lesson
- Do what makes YOU happy. Someone will always be upset with the choice you made so do what makes you happy.
- You cannot change other people. I have spent a great deal of my adult life thinking that some of the people around me would change and be/act how I would want them to be and every time I would be disappointed. You cannot change anyone. Once you learn to accept that you will stop (or at lessen) how often you are disappointed.
- Live a life that your kids will be proud to talk about one day. Everything that I do is for my kids. Everything I do for them I hope that one day when I am gone they will talk about with pride
- Find the joy in the small and simple pleasures. They will truly be the things you appreciate the most.
- You get one shot at life. When you are looking death in the eye make sure that your list of regrets and things you wish you could change is short.
I am thankful for the past six years. I am thankful for those that have been there for me through it all. I have felt so much love from so many. I am not sure how much longer I can physically or mentally tolerate this journey but I will continue to hope and pray for a miracle and live my life to the fullest in the meantime.