So I’ve been wrestling with whether or not to talk about this on the blog, but I think it’s worth a shot because if anyone can offer me some tangible help … well, it would mean a lot.
Recently, I found out my 35-year-old cousin has cancer. She’s always been in basically good health and as far as my family goes there’s a relatively low occurrence of cancers.
She went into the hospital with serious stomach pains and at first they thought it was going to be an emergency gallbladder removal. But after looking inside, the doctors could see right away that it was not the gallbladder but something far worse. It took them about two weeks to nail down exactly the form of cancer she has and in that time her condition became dire on more than one occasion.
Finally, a couple weeks ago the tests came back conclusively that my cousin has a very rare form of mesothelioma. According to the National Cancer Institute, the majority of cases (70-80%) of mesothelioma are caused by exposure to asbestos. The most common form of mesothelioma, according to the American Cancer Society, is diagnosed in about 2,000 Americans each year and is in the lungs and generally occurs 20-30 years after exposure to asbestos. (In fact, construction workers and those who have lived or worked in old buildings are generally the people who get mesothelioma.)
Unfortunately, my cousin who has a 15-month old son, has an even rarer form of mesothelioma. Diagnosed in about 100-200 people per year, her form of the cancer is in her abdominal cavity. (And I should note, she has never worked in construction but did grow up in a rural farming community in Illinois — the same one I was born in — and went to school in old buildings while her father worked as a state prison guard. Our only clue as to this cancer’s origin seems to be from environmental factors related to spending time in old buildings. But it is impossible to be certain.)
Since being diagnosed with the cancer, she has nearly died at least three times and has not been able to leave the hospital or even receive chemotherapy because her situation has been so extreme and unstable. Just a few days ago she was rushed into emergency surgery for a bowel obstruction (the tumor has cut off blood supply to part of her colon) and they found a section of her colon had gangrene. On that day, the doctors advised that she may die. Thankfully, she has made a somewhat miraculous turn-around and we are hoping and praying for continued progress.
One of the only facilities in the country that can treat mesothelioma — especially her rare version — is at John’s Hopkins Hospital in Baltimore. But until her condition can be stabilized and she can travel, she remains at a hospital in St. Louis getting the best treatment they can offer in her situation. But the doctors admit that they are not experts in this situation, so it is frustrating and difficult.
To make matters worse, to my knowledge my cousin does not have insurance, or at least very limited insurance. Her fiance’ is a substitute teacher. My family has been rallying around them and trying to raise money to help their situation as best we can. I can’t even imagine the kinds of mounting bills she is facing. While I am no expert on cancer or insurance, I have seen how much it has cost my father-in-law as he’s been battling terminal pancreatic cancer. What I have become intimately aware of over the past eight months is that it is incredibly expensive to be seriously ill in this country.
So there are two reasons I am writing about this deeply personal matter.
One is that, admittedly, I am grasping at straws that there may be someone out there who can offer guidance or help in my cousin’s situation. One of the most frustrating things about her situation is the lack of information or community available. The doctors have done their best, but even if you go to the ACS or NCI websites, the information is sparse because of the relative rarity of this cancer. Unlike more common forms of cancer, like breast cancer for instance, it’s hard to find others who have gone through this situation. It would be nice to meet others who know something about mesothelioma — particularly the abdominal cavity version. (But please, no attorneys. I’m not looking for information on lawsuits.)
The other reason I am writing about this is to highlight my personal passion related to the intersection of environmental issues, industry, class issues and the larger medical/insurance complex. While I did not know this was going to happen when I applied to become the new Southern Nevada director of PLAN (a position I officially start next week), it seems like some kind of wicked irony that this should happen at this time in my life. Who knows how an organization like PLAN could have changed things in the community where my family is from? (And I should say, I do not know if there is/are organization(s) working on these issues in that part of the country.) And incidentally, my cousin and I are probably the two most liberal people in my family. She’s worked as a labor organizer and I’m going to work for the Progressive Leadership Alliance of Nevada.
The area of the country where my cousin has lived most of her life not only has a large amount of poverty, farming and mining but a lot of old buildings and dying rural towns. I want to be clear that I am not blaming farming, mining or rural towns for my cousin’s situation (or anyone else’s). But there is evidence that where a person was raised, where they live and where they work contributes directly to their health. We’ll never know why my cousin has mesothelioma. I understand that. And I’m not looking for “answers” in that regard because in this case that is pointless.
But for most of my adult life I have been a crusader for environmental justice, particularly as it pertains to those most at-risk of its effects — the disenfranchised, the poor and those who live or work in or around industries that could result in harm to their health. Part of this comes from my own experience growing up poor. Reading Jonathan Kozol’s book Savage Inequalities while in college only solidified and validated my experience and illuminated how much more pervasive it is in our society than I had seen personally.
So, again, I just want to put this out into the universe and see if anything can come back to me that could be helpful or beneficial for my cousin and those like her. It’s not often that my causes have such a personal and immediate connection, but I feel like it would be wrong to not use all the resources I have available to me to try and help her.