Time for some real talk. I don't know why it is...... but some days, and quite honestly, some weeks and months I purposely put myself in a bubble. A non cancer bubble. I pretend that I don't have stage four cancer. I play a fantasy in my mind. It goes something like this: I have been NEAD (no evidence of active disease) for 3.5 years and still on first line treatment. So perhaps everyone is wrong and I had an earlier stage of breast cancer (I didn't, I've seen the PET scan). BUT, what if........and then when I hit that 5 year mark my oncologist will tell me that I am in remission. That I don't have a time bomb strapped to my back and that I can go back to easy living. It is a beautiful dream that I think helps to protect my mental health and allows me to choose joy and take some deeper breaths. During my time in this fantasy bubble I typically gloss over all the MBC Facebook groups, avoid research articles and really avoid anything cancer related.
The unfortunate/fortunate side effect of MBC is that I now have friends living with this disease too. I obviously don't exclude them or put them on mute; because I know how that feels. I read their posts, I pray for them and try to support them from our new normal social distance. Right now I have three friends with fluid on their lungs that is swimming with cancer cells. Did you know that cancer is a tricky MF it likes to twist and change. Tumors change all the time. So scanning, biopsies and trying new medications becomes the dance. Their stories, one after the other, slipped inside my bubble and well, it burst. Similar to the analogy that I have used before; the balloon floating above my head is now a dead weight pulling me down. All the feelings came flooding back and I realize that this is my truth. One day I could be in the same boat as my friends and that fricking sucks. They did everything right, they have super knowledgeable medical team. They are on top of medical research and clinical trials. They are AMAZING women with beautiful families and there is NOTHING they or I can do to change the truth. Besides raising money for MBC cancer research so the scientist can work for a cure.
Today as I drive to chemo in the rain and I think of my mortality; I have to feel blessed. My treatments are working. I have to take some deep breaths and realize that my bubble has popped right now and I am going to feel lots of shit. I am going to be okay. Like I tell my kids, I can do hard things. I am going to relish in the moments to create memories with my family. This forced downtime is an opportunity to make significant connections with my kids. I am going to show up for my friends. I am going to support my MBC friends near and far as best I can during a pandemic. These women will have to deal with: lung taps. ALONE, Surgeries and overnight hospital stays. ALONE. Biopsies. ALONE. Starting new IV chemo. ALONE. Unknown side effects. ALONE. It is crazy times to have cancer with covid-19. Most clinical trials that perhaps could save a life are on hold because of the pandemic. Can you imagine the one thing that might save your life is not available? The thoughts of what they are going through is heavy. I have other friends that are stable; but the medication they have to endure to be "stable" comes at a high cost. Low blood counts, hair loss, GI issues, and fatigue to name a few. It messes with your quality of life. You have to take the good with the bad and decide how much you can endure. When quality of life out weights treatment. Sometimes you get to make that choice for yourself and other times it is made for you. I have two MBC acquaintances that are in hospice. To be told that perhaps you have two weeks left to live. How do you spend your last two weeks? How do leave a legacy for your children without losing your shit by kicking, screaming and crying as your world comes crashing to an end? This world I am a part of is so SO heavy. Actually, the world today is HEAVY.
Today, I also feel guilty. Guilty that I am doing well while others are not. Guilty that I spent time in my bubble and not advocating for MBC. It is fair to live in denial when so many don't have the luxury? I don't know. I don't know. I am feeling a lot of shit today. I know I got to pull myself up by my bootstraps and build my bubble again. Perhaps I better leave a window or door open because I never know when my life story is going to mirror some of the ones going on around me right now. That is SCARY and that is the REAL TRUTH of living with metastatic breast cancer. Perhaps that is why I have survived the pandemic really well, because I am already living with the unknown. I already live with death. I know what is going to kill me. I get why people are stressed and why this time in our history is so uncertain and volatile. I don't wish cancer on anybody so that they can feel what I feel. There is a lot of unrest in the world right now. I never know what to say. Right now there are black men being murdered by police and cities are burning because of racism and social injustice. The world is hurting and today as the rain pours down and The Cars "Drive" is playing on the radio. I am just feeling so much hurt and I just don't know what we are going to do about it all.
Who's gonna tell you when, It's too late, Who's gonna tell you things, Aren't so great. You can't go on, thinkin', Nothings' wrong, but bye, Who's gonna drive you home, Tonight.? Who's gonna pick you up, When You fall? Who's gonna hang it up, When you call? Who's gonna pay attention, To your dreams? And who's gonna plug their ears, When you scream? You can't go on, thinkin' Nothings wrong, but bye, (Who's gonna drive you) (Who's gonna drive you)Who's gonna drive you home, tonight?(Who's gonna drive you home) Who's gonna hold you down, When you shake? Who's gonna come around, When you break?
You can't go on, thinkin', Nothin's wrong, but bye, (Who's gonna drive you) (Who's gonna drive you)Who's gonna drive you home, tonight? (Who's gonna drive you home)