Four years ago today, I was diagnosed with breast cancer. 1,461 days ago, a doctor walked in, sat down next to me and with sad puppy dog eyes, gave me terrible news. I was not scared. I was not worried about what was to come. I accepted what he said and immediately moved forward: "Okay, what is my treatment and when will I be done?"
I was absolutely sure I would be done.
If this was a Star Trek episode or an old Twilight Zone - if you could take my old brain out, the brain that inhabited my body four years ago, and pop it into the body I occupy now, it would run screaming, as far away as it could go. Emergency systems would activate and it would vacate immediately, red lights blinking, sirens blaring, veins pulsing. "What?" it would yell, "What the hell is this? What is happening? Why does every bone hurt, what is this pain across my midsection, why can't I lift my arms, why do I feel nauseated, why are there so many scars and missing body parts? What the HELL happened? The hair - it's grey!? The body, it wears pajamas in the daytime? My fingernails are ridged, crumbling and dark, wtf?"
And, because my brain tries to look for the positive, "Well, at least I'm fashionably thin, heroin chic, in fact. Is that still in style?"
That Ann could not have imagined living the way this Ann does - with the pain, lack of energy, weakness, constant exhaustion and the need for help that makes up day-to-day life. That Ann, the healthy, active, bossy, working, fashionable, in-charge person of four years ago had no idea what she was about to endure: numerous surgeries both large and small, life threatening infections, year after year of chemo, dying bone marrow, test after test after test, radiation and dyes and contrasts, hopes raised and hopes dashed. Ann of four years ago would have been stunned into horror if she was suddenly transported into Ann of today, shocked as if she had taken a polar plunge into the icy shore of Alaskan waters, in winter.
Early on, when that brown-eyed doctor gave me the news, I was unable to imagine this future. A doctor's words didn't clue me in, but neither did reading about other people's experiences in blogs or forums or articles. It turns out, one can't imagine this, what it's like to be in treatment for four years, to live with the knowledge of what your end will be, to have your future taken away. It has to be lived. My brain had to be here.
And, I suppose, if I live another four years - an extreme long-shot to be sure but others have done it - the same shock will happen as I think back to today. I can't imagine what it would be like to be in treatment for 8 years, even after having done so for four. I can't imagine the wreckage another four years will bring, both to my mental state and my body. It can get worse?
Do I even want to know?
No. It is hard to imagine four more years of a life like this. But it is far harder to imagine not living it.
There are times I wish we lived in a Twilight Zone episode. Would it not be fantastic to be able to drop our brains into somebody else's body for a time, just to walk in their footsteps? I think I'd pick Jennifer Aniston, or maybe Melinda Gates. I have no idea what it would be like to be a world-recognized beauty, or a wealthy philanthropist, both women who can have anything they want without thinking twice. It sounds glamorous but I know they have problems too and it would be interesting to experience them. It would also be nice to feel healthy again. Of course, if people could choose where to drop their brains, I suspect those people would be chosen all the time. There would be fights by brains all lining up waiting for a chance to get in Jennifer's skull. And, brain fights are ugly, trust me.
Me and the homeless guy on the street corner? We would not be fought over, I'm sure. So to make it more interesting, let's say we could do it to others - push a button on somebody, their brains pop out and you could drop them wherever you want. I think this is a perk only those of us with metastatic cancer or other life-ending disease should get, don't you think? We all know those people who tend to overly complain about piddly stuff while we are planning our own funerals. We could drop that woman who constantly whines about her wrinkles or her extra five pounds into our bodies so she could know what we experience. It would be wonderful to stop them in their tracks and have their brains scramble back to their own heads, realizing, "Oh yeah, life really is pretty good, I didn't really have a problem."
Personally, I might start with Oprah, complaining about not being shown a $38,000 purse in favor of a $30,000 purse, or complaining that Hermes wouldn't open their shop for her after hours, both incidents she deemed worthy of international attention. Oprah has forgotten what a real problem is, and worse, she's forgotten the mission that made her famous - the one of reminding women to be grateful.
Being grateful is important. Oprah, after all, can afford a $38,000 purse, and I'm sure she has plenty in her closet - a closet that is certainly bigger than my house. She has trusted friends and loved ones, she has a body that functions and that allows her to travel to Switzerland, and likely has a long life ahead of her that will be full of joys. And yet, she looks at what most would consider a marvelous life through a lens that keeps her from enjoying these immense gifts fully. Too many people focus on minor problems and imagine situations that may not be true, and a jolt of reality is what they need. What's more real than living with incurable cancer and in constant treatment?
So, Oprah, bzzzzz! The button is pushed and your brain is about to enter my body so you can get an idea of what hardship is really like.
You know what else would be fun? Cross-species brain exchange. Wouldn't it be interesting to get a brain's eye view of what your dog is thinking as it lays on the hard floor under your feet as you are typing away? Wouldn't it be satisfying to finally understand - really understand - why the washing machine is so damn frightening but the dryer isn't? Nothing says relaxation like a cat in a sunbeam - wouldn't it be pleasant to experience that? I think those of us with terminal illnesses could learn a little bit about acceptance and living day-to-day from our pets.
The truth that my Brain of Four Years Ago (B4YA) would discover is that I'm now a person limited by my physical capabilities and dependent on others, something that formerly independent brain would have a hard time believing. These limits cause changes in thinking, as do four years of drugs infused and ingested, as well as the stress of knowing that I will miss all I had planned in life: work, retiring with my husband, travel, seeing weddings, graduations, grandchildren. Mourning these things takes a toll and no, none of us who have metastatic cancer are ever the same. Our pre-diagnosis brains may not even recognize us without the ability to think beyond three months. So much of human thought process is taken up with what will be, what we'll do, that when that is taken away, we are inevitably different. With metastatic cancer, our lives are lived in 3 month increments.
Try it: For the next week, be conscious of what you think and say, and every time you mention or think of something that will happen more than 3 months from now, realize you can't plan for it. Anything beyond three months is out.
Your former brain might also be surprised that you want things to be easy now. Easy may not have been on your radar before, but now it's important. Your life is ending and it exists as it is: people must evaluate you on the entirety of what they know and nothing can be changed. There is no more time to fix or modify anything. It's natural to end up wanting to gather round the people whose love is simple and made up of acceptance. This means there may be different people in your life than you might have thought there would be before diagnosis. Some people naturally know how to make things easy on you, and understand that things should be easy on you at this point - that it isn't a selfish desire, or at least, an unrighteous desire: when should things be easy on us if not for when we are dying? These people you seek out now are those who are able to allow you to relax, and don't ask for much back. They will send a card or gift and not be upset if you don't get a thank you back to them quickly, or at all. They will give you the benefit of the doubt, they will be kind and naturally understand your suffering; that you are changed by drugs, therapies, grief and have less ability to give.
Some people, unintentionally, still need too much from you, like you were the B4YA. It becomes too exhausting to deal with other people's emotions, whether it be to comfort them, break through their denial, explain misunderstandings, or manage their personal problems as you would have in the past.
You just can't do it anymore - you are mourning. Your life has died. Many don't understand that, and it becomes too hard to explain. It's not that you feel their needs are unimportant, it's just that you have too many of your own, so you must let them go. Your brain needs ease and you need acceptance.
After four years of cancer, knowing the end is closer than the beginning - what is important? A hummingbird drinking from a flower. The brilliant smiles of your sons. A baby's excited movements. A dog so happy to see you that their tail is helicoptering. A cat that cuddles next to your stomach. A meal and card left on the porch. A hot bubble bath. A life partner who gently rubs your arm. Someone who texts you a joke. A friend who drives thousands of miles to visit, only to peacefully color with you. These small things are full of comfort and warmth.
If you took my brain out of my head four years ago and dropped it into my skull now, yes, I would be physically shocked at the changes - as if I had been plunged into that Alaskan water. But after a few gasps, I would notice that my loved ones are there, gently wrapping me in a warm towel and giving me hot, soothing tea.
And, at the end of life, that's all we need, and that is enough.
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I live with metastatic breast cancer. .
I was diagnosed 2009 with Stage 2 Her2+ breast cancer. Mastectomy followed, 6 rounds of chemo and a year of herceptin. A few months after I finished, cancer was found in my liver-incurable. I've done chemo after chemo, has my liver partially removed and did cyber knife radiation. Like all metsters, I'll be on treatment until I die.
I'm a former High School Secretary, wife, and mother of two great sons.
To read my entire cancer story, go to www.butdoctorihatepink.com and find the post called "What the heck is that?" on September 2, 2009, or look at the top of the blog and click on "chronological posts". (Some issues with the feed on that but it will get you started). If you are a blogger who can give me a link, I'd appreciate it very much. To email me, click on my profile and you'll find a email addy. I answer every email from a cancer patient. Also like my Facebook page, www.facebook.com/Facebook. I'm butdoctorihatepink on Instagram and @butdocihatepink on Twitter. Like me while you can!