Happy Birthday, You're Not Dead

Today is my birthday. I am 57 years old. For many, that is not too old. Frankly, it's pretty solidly middle-age in this world. But for me, it's old. Really old. 

I had just turned 47 when I got the news that I had Stage IV metastatic breast cancer to the liver. Before that, I'd always been stunningly health. Two years prior, my beloved mother died of a massive stroke, and there'd been question about how to locate her Advance Directive. The search took long enough that it was about to get messy, but someone finally found the document and we put her wishes into effect. The incident unnerved me enough, though, that I'd figured out if I got a MedicAlert bracelet, I could have that company keep a copy of my Advance Directive on file and health officials could call the company for a copy of my final wishes.

When I ordered the medical id bracelet, a lovely young woman called me to ask what I wanted engraved on the id. Diabetic? Congestive heart failure? Usually wearers listed a health condition. I had none to give, so I coyly suggested high cholesterol. Nope. Finally, we settled on "Call MedicAlert." That worked. But clearly, I had few health problems. I was still in the world of, I'll live a long, long, long time and die of heart failure or stroke at an advanced age, like my mother had done, and her mother had done before her. So the words "You have lesions on your liver" coming from the nurse's mouth didn't compute. Cancer? What the...? Stage IV breast cancer at 47? Sweet Jesus. No one in my family died of cancer. I wanted to go back into the They Who Die of Stroke group.

But let's be real. Life is not fair. I was now a member of the Cancer Club, sporting a fresh case of HER2+ metastatic breast cancer like a new Scout's badge. I hadn't even worked for it. Sure, I carried a few extra pounds and I had spent some time drinking a little too much. But HER2+ cancers tend not to be linked to lifestyle factors like fat or alcohol. And frankly, if fat and alcohol were the key, most of my family would have joined me on that cancer journey long before. Nope, that extra mouthful of sour cream increased my odds of heart disease but not of HER2+ breast cancer. I was just unlucky. HER2+ breast cancer tends to hit more younger women, the women less likely to be scanned because they're considered at lower risk.

When I was first diagnosed with cancer, I didn't think about the possibility that I might die. Sure, I made certain that my Will and Advance Directive were up to date. But my main focus was on getting through the treatment and tracking my progress, which luckily was very good. Looking back though, I realize there was a good chance that some around me assumed I was going to die. My estranged father and brother, both doctors, began calling me once a week to talk, which was unexpected. I didn't even stop to think that either of them were assuming the cancer would kill me. Frankly, I'm grateful I didn't know better. My liver was covered with lesions. Any doctor hearing this would, I'm sure, assume the patient in question didn't have much time to live. But I focused on the image of that cancer decreasing and going away. Weekly Taxol and Herceptin and incredible medical care made that happen, saving my life. And now, 10 years later, it is my father who is the one who is gone. You just never know who is going to go when. 

I have the bad luck of having Stage IV cancer, but also the good luck to have a cancer that so far has responded to the treatments aimed at it. And I have the good fortune to be assertive when it comes to my medical care. It's exhausting, but I push for good medical care, and do a great deal of medical literature research via PuMed.gov and other authoritative sources, which I then take back to my care team for shared decision making.  As I tell others, my doctors and nurses care about me and want me to live, but at the end of the day, this is a job for them, but for me this is my life. 

So here I am, 10 years later, turning 57, still alive. It is hard to believe.  When I realized the milestone today, I began to tear up. It's been a long 10 years, some of it good, some of it bad. But in the famous words of Stephen Sondheim, "I'm Still Here." Happy birthday to me. And here's to not being dead.

Finding A Higher Power

I've never been comfortable with the traditional Christian language sometimes used in the Big Book of Alcoholics Anonymous (I've been sober for a while now). A major tenet of Alcoholics Anonymous is to turn to a higher power for help. I figure something is out there, I just don't know what that is. But I don't feel comfortable with the idea of a God on high who makes things happen (a lot of very bad things happen and a god who doles out bad things scares the bejeebies out of me). What works for me is to see AA as a whole as my higher power, the fact that millions of recovering drunks are out there running meetings, volunteering to answer calls, making bad meeting coffee. That God with skin on has kept me sober for years. 

I'm a big fan of the cartoonist Dan Piraro and interestingly he wrote a blog post on the subject of God that really clicked for me.  His point in that post was that we are all part of a larger creative force; we are all part of one being. Now that I can get into. Thank goodness for the second half of the Third Step in AA, God as we understood God. That part of Step 3 means all us recovering drunks get to choose a higher power that works best for us. And Piraro`s creative force sounds a bit like my AA as a whole higher power, just bigger. Maybe my higher power just changed a bit. Either way, I get to choose.

Here is the meat of what Piraro wrote:

"In a previous post, I wrote about 'the finger pointing at the Moon,' which is a Buddhist metaphor for how we sometimes fall in love with the pointing finger (religion) instead of the Moon it is pointing at (God). That rings a bell for me.  Another concept I very much like is that we are not independent individuals but small, interdependent parts of an enormous being of creative force.

It is rather scientifically undeniable that nothing in this world lives independent of everything else, and in that sense, nothing is independent; it’s all one thing. We cannot live without air, water, microorganisms, and on and on, and those things cannot exist without millions of other things. Ergo, there are no independent individuals, only pieces of worlds and systems much larger and much smaller. 

I’ve come to think of that enormous engine that continuously generates and sustains life as the symbolic Moon that so many fingers are pointing at. Does this giant, living thing have intention, intelligence, purpose? We can’t know for sure but once you start to dial into it, it certainly seems to. 

And if this enormous force of life and creativity is what you want to call 'GOD' (or 'Skippy' or 'Barbara' or 'Zardoz') that’s fine, but it is not a person living somewhere outside of here, we are something living inside of it. In fact, we are parts of it the way microbes are parts of us."

I've experienced a lot of sadness and grief in the last several years and that sadness doesn't seem to have an end. The idea of a God on high, a single, above-us entity, has never offered comfort to me. But the idea of being part of a larger whole, a sort of universe-encompassing group hug, offers me some peace. An upset friend recently indicted me of being desperate for connection--long story, she's in a bad space and I'd ticked her off, so this was her angry response. My reply? Yes, I do want connection. We all do, especially during these isolated Covid times. So if I can hunker down into the warmth of a creative force group hug, sucking up all the connection I need, I'm taking it. Thank you, Dan Piraro for your often hilarious cartoons and your most excellent thoughts on God. I needed that.  Now get on over here and get in the group hug.

View From Stage IV: Ringing The Bell

Today, during my monthly treatment, another cancer patient rang the bell celebrating the end of treatment, while the staff happily and loudly clapped in congratulations. Meanwhile, hooked in to my never-ending treatment supply, I darkly thought the following:

For metastatic cancer patients, do they get to ring the bell as they die? Because we all know that's the end of treatment for them.

Black thoughts on a metastatic cancer treatment day.