I’m halfway through chemotherapy and my vision has drastically worsened. Can’t see out of my contacts and wearing them is suddenly very uncomfortable. Can’t see out of my old eyeglasses either; I’m guessing it’s because the glasses are at least two prescriptions old. Vision changes are sometimes a side-effect of chemotherapy.

Yesterday, I went to my usual vision clinic to get an updated prescription and some new contacts, only to be informed that I have developed a lesion in my left eye, which, the OD tells me, is

1) Probably viral, and
2) Probably formed because my immunity system is compromised  from the chemo.

She immediately refers me to an ophthalmology MD and insists that I get in right away so that the lesion doesn’t get any worse, or do permanent damage. She tells me that I will need at minimum an examination from a specialist, and (even more) prescriptions. Only after it’s healed will I be able to return to her to get a new prescription and contacts.

Oh, yay; no new contacts or glasses for me until this newest medical issue is addressed. Of course, my insurance covers none of yesterday’s appointment; and this morning I am informed that the cost just to walk into the Ophthalmologist for this afternoon’s appointment will be $300.00. Great. Tomorrow is another chemo day, along with two more very expensive co-pays to see my Oncologist and for the Chemotherapy, itself. So, do I choose to treat my vision or my cancer? Do I choose to pick up the latest batch of prescriptions for this next round of chemotherapy, or do I choose to pay the (already very late) electric bill? Is this constant stress, worry and fear about how I am going to continue to afford this damn cancer going to make said damn cancer worse? I don’t know the answers to any of these questions; but I do now know that there is an actual term for what I am experiencing: Financial Toxicity.[i]

I am not remotely alone in this. In 2018, 72 percent of families report losing more than 50 percent of their income after a cancer diagnosis; up to 73 percent of adult cancer patients experience some sort of cancer-related financial toxicity.  The financial fallout from breast cancer can last years after diagnosis, and some families will never financially recover.  Many file bankruptcy. What’s more, a recent study showed that nearly half of cancer patients reported that they weren’t adhering to treatment regimens because of the cost. If you’ve never experienced it, I can tell you from personal experience that it’s really difficult to follow financially astronomical treatment regimens when you have to choose between your treatment plan or your rent/mortgage, utilities, car payment, gas, food for your family. Because if you don’t have a home, a car, electricity, gas, water or food, your cancer is not the priority.

Welcome to healthcare in 2018 America.

I cry for just a couple of minutes after I get off the phone with first the ophthalmologist’s office, and then my insurance company. I feel alone and scared and a little bit angry, and I allow myself a whole five minutes to have this little pity party of one.

And then I stop, because I remember, once again, that I am so much more fortunate than many; and I consciously make the decision to keep this realization foremost in my mind. I could be in Syria. I could be in Yemen. I could be among the homeless people I see every single day in Houston. I could be among the  millions of single mothers or elderly experiencing food poverty in America. I could ACTUALLY BE all alone, with no one to love me. I could be starving to death in a third world country while watching my children die an agonizing death from a completely preventable cause. I could be in a war zone being bombed on a daily basis. I could be in Zambia being raped while trying to collect the daily water for my family. I could be living in extreme poverty in a third world country, with no hope for change. I could be a refugee with no country to take me in. I could be …  I could be…

See? I have so many other blessings that others are desperately praying for.

Gratitude. Gratitude. Gratitude.
Peace. Hope. Faith. Love.

During these last three months of this cancer journey, I have met many women, both in person and through various breast cancer forums, who cannot afford to receive the necessary treatment plan for their stage 3 or 4 breast cancer, because they either have a $500+ co-pay for oncology appointments and chemotherapy, or, because like the sister-in-law of the sweet phlebotomist who draws my blood for my labs every other week, they have no medical insurance at all. The beautiful woman who has a $500+ co-pay and who is forgoing treatment because she can’t afford it is only 36 years old, with four young children. The sister-in-law of my phlebotomist is dying. These women, and so many others like them, live in one of the wealthiest countries in the world but are forgoing life-extending or even life-saving medical treatment because it is financially far out of reach. In the United States of America.

What, exactly, does this say about our American values, morals, priorities? What does it say about America when we  choose to cut research funding for cancer so that the allotted money can instead go towards separating immigrant families in for-profit facilities and to lock up children in cages? What does it say when our President will willingly spend $250+ million to call up and send 15,000 troops to our border for a “refugee invasion,” as he insists that Medicare and Medicaid expansion are absurd ideas because we are trillions in national debt? What does it say when our elected officials  plan for huge across-the-board “entitlement cuts” while they simultaneously vote for an enormous tax cut for the privileged, the wealthy and big corporations? What does it say about us when we allow for-profit MCOs to continue to earn billions from Medicaid as they routinely deny our children, our disabled and our poor much-needed medical treatment, medical devices and therapy?  What does it say when we choose to re-elect politicians who accept millions from insurance companies’ lobbyists, who then turn around and vote against mandated coverage for pre-existing conditions? What does it say when access to healthcare for Americans takes a backseat to all of these other priorities?  I wonder what all of this says about the people of America? I wonder what the rest of the world thinks it says about the people of America? I wonder what God think it says...

References:

http://www.ascopost.com/News/59292

https://www.sciencedaily.com/releases/2018/08/180822114444.htm

https://health.usnews.com/health-care/patient-advice/articles/2018-02-23/whats-the-financial-cost-of-breast-cancer

https://www.forbes.com/sites/arleneweintraub/2017/08/10/even-insured-patients-are-overwhelmed-by-the-cost-of-cancer-care/#2a16989751c4