Wednesday, November 20, 2013

The Cost of Cancer

A few nights ago, some of my friends organized a group of about a dozen 13-year-old boys who want to spend time with Adi on Friday mornings. The group came over to meet Adi, to hear about his special needs and leukemia, to ask questions, and so on. We introduced them to Adi and talked a little bit about Sotos syndrome, and then about how our lives have changed since Adi's leukemia diagnosis. We explained that Adi's treatment is intense -- currently, he's in the hospital for chemo at least four days a week, for example. We explained that even when he is at home, he needs constant care -- that he is sometimes to weak to walk unassisted, to get to the bathroom, and so on. And then the boys started asking questions.

"If you have to take care of Adi all the time, how do you go to work?" one asked.

"That's a great question," I said. "I stopped working so that I can take care of Adi."

Another boy raised his hand. "So, how do you guys manage financially?"

As my friend searched frantically for a hole in my floor into which she could climb, Guy and I laughed and told the boys that it's not always easy, but we manage.

Up until two months ago, I contributed a significant amount of income to our household. Today, I contribute NO income. So, in a sense, you could say that the cost of cancer starts with what I earn in a year -- but the thing is that it certainly doesn't end there.

Before leukemia, I hardly ever used my cellphone to actually talk to people, so I had this cheapo plan, but now my phone rings ALL THE TIME, and I have to actually interact with people, so we got this SUPER CRAZY HIGH BILL and then we switched cell phone companies, but that was AFTER we paid about 4 times as much as we normally do.

And then there's the stuff we buy at the hospital. A quick visit turns into 11 hours, and Adi asks for Cheetos, so I go buy some, and even with the oncology discount (10%, baby!), the Cheetos still cost like $87 or something. Plus coffee. And sometimes sandwiches, and iced tea for Adi, and a toy at the gift shop, and bottles of iced tea at the grocery store for our house and extra junk food because maybe Adi will eat it, and treats for the other kids, because if we don't have time to be with them, we can at least buy them stuff!, and delivery from the burger place because when your kid with cancer asks for a burger after not eating for a month, you BUY THE BURGERS, and the yogurts that cost FOUR TIMES AS MUCH as the other yogurts, because OF COURSE that is the brand he likes and will actually eat.

I would estimate that in a given week, we spend about $50-$75 on stuff at the hospital. (My friend Mara just passed out.) At least we don't have to pay for parking anymore, now that we have our handicapped parking pass!

Oh, and I guess the gas we use to get to the hospital is an expense, too. And this is Israel, where gas is, like $452/gallon. (I may be slightly underestimating.)

And, as I recently lamented on Facebook, soon I will have to give up my beloved hair extensions -- because yes, I am THAT VAIN, and I started wearing hair extensions about a year and a half ago so that I could have long, thick hair, and I have loved every second of it. The thing is, those extensions are SUPER EXPENSIVE, and I apparently blogging about your kid with leukemia is NOT a highly lucrative profession, so I guess you can add my extensions to the cost of cancer.

Fortunately, the treatment itself is mostly covered. We pay exactly NOTHING for our extended hospital stays, our outpatient treatment, and so on. We pay very little for the drugs Adi takes at home. Also, we have not had to purchase meat in forever because our neighbors keep cooking for us. So maybe it all evens out? Except for the part where I no longer earn any money.

Already, several people have tried to give our family money in various ways, which is lovely, but no. I was in the grocery store one day when a woman came up to me and said in a stage whisper, "Are you... okay for money?" And I looked around to be sure she was talking to me, and I said, "Um, yes?"

She gestured to my cart. "Can you pay for that?" I said that I could.

"Because, if we wanted to take up a collection for you, would you accept that?"

"Um, no?"

"Because we can, you know."

And really, it's a lovely gesture, but I really do feel like the things we cannot afford right now (HAIR EXTENSIONS) are not things that I feel comfortable letting other people pay for.

So, in a sense, I guess the other cost of cancer is my pride. Because I am really not used to people asking if I can afford to pay for my groceries while I am buying them.


Chana Friedman said...

Abbi- Your writing is raw and honest and I hope you never stop!

Mara said...

I did *not* pass out!

I just love you, Abbi.

Avi said...

Thanks for sharing.
My special_needs_child also has its financial impact, so I can imagine what you r going through..

(Mind you, hair extensions can be bought in Aliexpress. I never tried it myself, but basically almost everything can be bought there much cheaper than in Israel. Just be careful and thoroughly review feedbacks).