“I’ve learned that people will forget what you’ve said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
The past few weeks have been interesting, to say the least. My last treatment protocol has stopped working so it’s on to the next option. I’ve just finished my first two weeks of my new drug, Xeloda, which is an oral chemo pill. I take it twice a day for two weeks and then get one week off. I’ve had some nausea, and much more fatigue. My walks have turned into “strolls.” I’ve also had some chest pains which we are trying to figure out. Lot’s of appointments scheduled with the cardiologist this week. I’m hoping that my body is figuring out this new drug and that things will get easier. I think they will. I’m nothing, if not adaptable.
The last weeks have also been full of grief and memories. My wonderful “Uncle Moose” passed away unexpectedly on October 10. Every child should have an Uncle Moose in their life. He was as big in personality as he was in stature. ” 5 ft. 20 1/2 inches” as he’d say. He believed in having fun, lots of crazy fun, but was also extremely safety conscious. He made me feel safe. Whether it was teaching me how to scuba dive, or rappel off a cliff. Those are things I would have never tried without him. I trusted him. We are a family of swimmers, and one of my first memories of Uncle Moose is of him teaching me how to dive. I remember standing, shivering on the end of the diving board. A tall, skinny girl looking down and thinking the water looked a million miles away. But Uncle Moose was there calling to me and letting me know that he would be there to keep me safe. And so I dove. He taught me how to float on my back too. I think of his words often in my current situation. Sometimes, the more we struggle the more we sink. In order to float you have to let go of the fear and anxiety. You have to let go of the unknown. You have to trust that the water will hold you up. You have to have faith.
I remember the first October I survived after initially being diagnosed with breast cancer. It was overwhelming. I was just getting my hair back and I felt like sobbing with grief every time I went into a store and saw another pink display. I was grieving over who I had been, who I was then, and what the future would look like. Now, 8 years later the “pink attack” has intensified to such a degree that I’m tempted to stay in my house for the month. My perspective has changed too. I now have metastatic breast cancer, an incurable and fatal disease. My concept of what breast cancer awareness should be has changed radically. I still remember leaving the doctor’s office after my 5 year check up. I was smiling ear to ear and practically floated into the elevator. There was a woman in the elevator who commented on my happiness and I shared with her that I was done! I was a survivor!
I remember her looking at me and softly saying “Oh, Honey.” I was so annoyed at her. How dare she try to ruin my moment. Now I look back and know she was just wishing she could share with me the truth. There is no magical five-year “safety zone” when you’ve had breast cancer. 25-30% of breast cancer patients will go on to develop metastatic breast cancer and it can be 1, 5, 10 ,15, or even 20 years after your diagnosis. Basically, if you’ve had breast cancer you won’t know if it’s going to kill you until you die from something else. Less than 5% of funds raised for breast cancer “awareness” go towards research of metastatic disease. We need to change our definition of awareness and breast cancer education. Many people still don’t know how to recognize inflammatory breast cancer. People certainly don’t understand metastatic breast cancer. I had no family history of breast cancer. I was diagnosed at stage 1a, I exercised, ate well, did holistic nutrition, yoga, meditation, and followed my doctor’s recommendations to the letter and it still came back. Scary stuff I agree, but we can make it less scary by funding research towards metastatic disease. This creates a safety net for everyone. It provides hope for establishing treatment protocols that can extend life for meaningful lengths of time. Hopefully, we begin to understand how cancer metastasizes so we can prevent it from happening in the first place.
So many people are touched by breast cancer. Breast cancer is the second leading cause of cancer death in women after lung cancer. I understand how as compassionate beings we want to help. We naturally want a standard or rallying cry to bring us together and move us forward. Pink has become that for breast cancer. But please, “Think before you pink” and choose the cause you support carefully. Make your dollars count towards the future and the possibility of extending someone’s life and please choose to fund research of metastatic disease. Here’s our Team Judy video to show you what we do to fund research. Another fantastic organization to fund is METAvivor.
My scans came back basically stable. I have one new lesion in my left femur, but all of the other lesions on my spine have stayed stable. That’s excellent news! It’s what you want to hear from scans. It meant I was able to leave on our vacation without having to change meds and in much better shape physically then I could have been from new side effects. Living with mbc is a crazy ride. The cycle of “scan, treat, repeat” can feel overwhelming. You start living your life in 30 day increments, or whatever period of time there is between scans and doctor appointments. Each time you have a good scan you’re elated, but that’s balanced by the idea that you’ve used up another one of your wishes and the next scan might not be so great. That’s where the constant intentional act of learning how to maintain balance comes in to play. So, here I am, off on an adventure, enjoying each day and taking in as much as I can of the amazing scenery and daily adventures. It’s a little bittersweet though. Each time I leave a place I wonder if I’ll ever be back and if I am, what kind of physical shape will I be in?