Independence. What that word means to somebody who has metastatic breast cancer is vastly different than what it means to somebody who is celebrating Independence Day in the United States on July 4th, 2020.
Independence Day in the United States celebrates becoming independent from a tax that was imposed upon the people who settled the new world for a country far away and across the sea. And in someways a tax is being imposed upon those of us with metastatic breast cancer by something far away and not for us to see. It’s an independence that’s been robbed from us by a disease but also an independence that’s been robbed from us by a high tax on us financially, physically, and emotionally.
Our independence has been robbed from us financially because there are so many financial worries and burdens that go along with having metastatic disease. One of those impositions is access to healthcare in general. It is very expensive. And what I mean by very expensive is that our insurance might cover some of our healthcare costs but the fact is that most of us are unable to work and unable to pay for simple things like our phone bills and electric bills in the months our medical costs are higher than what we actually can get from our Social Security and disability. That’s if we are able to meet the criteria to receive Medicare and early retirement if we are under 62 years of age. The criteria is essentially being completely broke. This in and of itself causes us to be dependent on others in our lives if we’re lucky and in times of real financial despair, nonprofit organizations that can help us pay our bills and for medication or copays when we really need it. I am lucky enough to have someone in my life who allows me to be somewhat independent from those financial worries. But then again I am dependent upon him and that makes things a little stressful in our relationship. Of course every once in a while he becomes slightly resentful, though he really tries not to show it. I don’t think he’s resentful of me per se, he’s resentful of the metastatic breast cancer that I have.￼
Then there is the physical dependence. We are no longer physically independent and some of us cannot do the things that we used to do anymore. We cannot lift if we have lymphedema, we cannot run if we have pain from mets that have gone to our bones, we cannot do any of the things that we used to do easily or gracefully. I know that my mornings are quite dependent upon my pain medication. It’s hard for me to even get down a flight of stairs some mornings without having sat in bed while my medications traveled through my body so that I could move easily enough. So I am fairly dependent on drugs. I suppose that would make me an addict. But in this case being addicted to opioids is worth the dependence upon the drug itself. It allows me for some independence from pain.￼
Then there is the emotional independence that we’ve lost. Going through Post Traumatic Stress Disorder makes a person depend upon themselves, reaching deep in our hearts and souls to pull up as much strength as we can in it in order to flush down the fear and loathing and the stress that comes along with having a disease it’s going to kill us. A disease that we don’t have a chance to recover from. There is no Independence Day for us now or in the future. We’re dependent upon the medical community to come up with medications that might extend our lives a few months or even a few years.
Hopefully in my lifetime will come up with a way to eradicate my disease. But with less than 7% and I’m being generous here of all research dollars going to metastatic cancer it’s fairly impossible that it’s going to happen in my lifetime. So I am dependent upon the researchers, the physicians, oncologists, and all of the other professionals who are busy working hard and steady trying to cure my disease.
But there’s a dependence that I do like. There’s a dependence on the Support community that I have found through nonprofit groups like Living Beyond Breast Cancer (at LBBC.org), and the loosely formed groups of other breast cancer and metastatic breast cancer women and men who online, and sometimes even on the telephone, help me through those days when my lack of independence really weighs on me heavily.
So what Independence Day really represents to me is a reminder. It’s a reminder that I have no army around me to help me become independent. It’s more of dependence day. It reminds me that I am dependent upon medications, upon other people, upon the medical community, and mainly upon myself to hopefully wake up one more day on July 5th. I know that I am without tumors in my body at least for the moment. But I cannot write a letter and send it to King and then send my troops out to war. And I do not like the war metaphor as it relates to metastatic cancer.
For war implies that there’s a winner and a loser. And I am no loser. And when I do die I will not have lost my life to cancer. I will have died from lack of a cure. So when I think of Independence Day I think of a cure for cancer. And that would be in the true independence day for all of us wouldn’t it?￼￼￼￼￼￼￼￼￼￼￼￼￼￼￼￼