The Cancer Card

People are really supportive and sympathetic when they hear that you’ve had cancer. It is a wonderful thing, but I know that there are people who take advantage of it. I’ve read about people bringing it up when they’re trying to get their way at a restaurant or a store. Because people have such strong associations with cancer, it often works. Mentioning it automatically makes people want to be extra nice to you. So, of course, people do it to get their way. That seems so wrong.

I call it playing the cancer card.

If the cancer or treatments actually caused a problem that the person needed help with, that’s different. Reaching something from the electric cart, needing help getting groceries to the car, needing to move to another table because the smell of the woman’s perfume at the next table is making you sick – that’s all legitimate. That’s a real problem, and cancer is part of it. You can’t really explain the problem without explaining the cancer. But doing it only to get something for free or something you want when it’s not really a problem caused by the cancer is taking advantage of people. And it’s using a disease and people’s emotions in a truly unfeeling way.

I don’t want to do that. Ever.

At the same time, I’m very comfortable with my past. I don’t hide it, and if it’s relevant, I might say something about it. I’m not trying to mess with people. It’s like mentioning something that happened in school. It’s part of my life. Sometimes I get reminded of it or it relates to what we’re talking about, and it comes out.

Then, I worry that people think I did it on purpose. To get attention. To get special treatment.

Yesterday, I mentioned it without thinking. I was talking on the phone about a loan payment. They’d sent me some paperwork, and I didn’t get it done. I probably received it, but I was finishing my treatments around that time, and I wasn’t paying enough attention to everything else. I’m still playing catch-up. Well, when he started telling me about reminders I could do to keep it from happening again, I blurted out what happened.

I wasn’t trying to change anything. He had already told me what I needed to do, and I was ok with that. I was only trying to explain why it was a one-time kind of problem (I hope), so I didn’t really need the rest of the reminders and stuff.

I really shocked him. I could hear that he was upset and that he didn’t know what to say. I didn’t mean to. I’m so used to it that sometimes I forget that other people aren’t or that they might feel strongly about it.

I told him that I was ok now and wished him a good day. But I still feel guilty. I hope I didn’t upset his day too badly. I know first-hand how one upsetting call/customer at work can make the rest of the day harder. But I don’t know what to do about it. Or how to keep it from happening again.

I don’t want to upset people, but my experience with cancer is part of my life. I don’t want to have to ignore it or tiptoe around it either. Isn’t there some option besides ignoring it completely and seeming to play the cancer card?

I don’t know.

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Soundtrack Snafu

I work at a desk in a cubicle. We’re allowed to play music as long as we wear headphones. A lot of the time, it’s a good thing I’m wearing headphones. I don’t always listen to stuff that’s safe for work.

The other day, I felt like I needed a boost, so I put on a reggae playlist on Pandora (It’s bouncy and fun). Right as an argument started next to me, it switched to Bobby McFerrin’s “Don’t Worry Be Happy.” Watching them fight and argue while mostly hearing that song? I gotta admit it was kind of hysterical. Like watching a movie with the wrong soundtrack.

I totally want to see some film student do that. I know horror films have used happy songs before to make a scene even sicker. But that’s not what I mean. No, I want to see a chick flick set to heavy metal. Or a Disney movie with a horror movie soundtrack – like creepy children’s choir. Something that totally doesn’t match what’s going on.

I think my mind would explode.

They Call Them the Depths of Despair for a Reason

The lowest point in my life so far was when I called the free student mental health clinic at my university. It was the culmination of years of mental and emotional barrages from abuse to the deaths of more and more people I care about. My sense of confidence and self-worth was picked apart and eroded on a daily basis, and at the same time my basic understanding of how the world worked was constantly challenged and destroyed.

I kept trying to build back up. I tried to tell myself that they were wrong. I tried to put it aside. I tried to prove that I had worth. Every time I tried, it would start out well which only made the final failure harsher. No matter what I did, something else happened. Something else went wrong. Finally, I shattered. I was so broken. I didn’t know what to do. So I called. I called and I got a pre-recorded answering service and hold music.

The only thing that kept me on the line was the fact that hanging up took energy I didn’t have.

When I got through the wait and recording, I was told that they didn’t have an opening for two weeks to a month. Hearing that, it was like a shockwave went through me, and the last thread of hope went numb. I remember thinking By then I’ll either be dead, or I’ll be ok. One way or the other, it wouldn’t matter.

The thought didn’t scare me then. It was a fact I accepted without question. The girl on the phone asked if I wanted to schedule. I politely said that wasn’t necessary, thanked her, and hung up.

I stayed that way for 2 years. Feeling numb and thinking that it wouldn’t matter if I was dead one minute, trembling with rage the next, fighting a panic attack the one after that, and falling to the floor crying the one after that. If I had stayed in that situation with those people, I believe with all my heart that I wouldn’t have made it.

I couldn’t handle them. I couldn’t handle the stress of facing that failure and criticism day after day after day. Even thinking about it now is hard.

So I got out. I cut everything that was hurting me out of my life – everything that I could control. I got the easiest job I could (What else could I possibly do ok at? Who else would want such a failure?). And started building back up. With the basics. Every time I succeeded at something, no matter how simple, it helped. Each day that went by with more successes than failures starting filling the cracks. Each week. Each month. I got stronger. I got more stable.

One piece of idle criticism from people I cared about could undo weeks, months of work.

But I kept going. I started trying bigger things. What was one more failure? I took shelter in apathy. In anger. I went to a therapist. I kept a journal. I kept moving forward. I still don’t know why. All I could do was focus on the pain and getting through it. Until I started therapy, I didn’t consciously know where those thoughts were leading me. I knew I had depression, but that was it. I didn’t recognize suicidal thoughts until the therapist told me what to watch for.

It didn’t strike me how low I’d been until I had a moment when I was happy. Actually happy. And I realized how long it’d been since I felt that way. And that it was measured in years.

Now, looking back, I see how far I’ve come. I’m not done. I haven’t beaten it completely. I’m not even close. At best, I’m on the lower slope of the mountain instead of the hole at the bottom. It’s taken me years to climb that far, and things still happen that send me sliding back.

That’s what ropes are for. And climbing axes. People who listen without judging. Small accomplishments. Therapists. Meds. Books with little, incremental steps to try. Whatever it takes – because I will do everything in my power to keep from falling back in that hole. I know the signs, and I know where I can get help before I go too far. I will fight that slide no matter what.

I’m gonna keep climbing. Even if I never make it to the top, I’ll be able to look back and see how far I’ve come. That’s something.

Hello. My Name Is Ann, and I’m a Blogging Addict

If I’m not careful, this blog is going to take over my life (I am so not joking).

I decided early to try to post every day. I figured that’d be fine. I didn’t know about notifications, the reader, comments, likes, or stats. I didn’t know I’d want to check it every few hours to see how many people visited my site – I can’t (I gotta work), but I want to. I really want to.

Part of me wants to download the app so that I can check it quickly and easily and get back to whatever else I was doing. Another part of me thinks that would make it worse. Feed the addiction.

I’m going to have to set some ground rules. Time limits. Number of times I can check per day. Something. Cuz this is getting ridiculous.

How To Reduce Costly Cancer Bills

When you or your loved one is sick and being treated, the last thing you want to worry about is your finances. Here are a few tips that can make things easier. This is written specifically for cancer, but the tips may help for any serious illness.

  1. Know your office policies and your rights with FMLA.

Depending on the kind of cancer, how strongly it affects you, and whether your work can make accommodations, you may or may not have to decrease or stop your work hours while on chemo. You can use your vacation days, but those don’t last long. If you have a short or long term disability policy, that can help cover the money lost from not working, but the longer you can’t work, the more you may worry about losing your job.

Hopefully, it won’t come to that. If it does, you should know that you do have some legal protection to help keep your job. The Family Medical Leave Act (FMLA) is a government act to let people take emergency leave without losing their job or benefits. Basically, you have so many weeks of leave guaranteed by law if you are seriously ill or if you need to take care of a spouse, child, or parent who is seriously ill. You won’t get paid for that time, but you’ll have a job to go back to. (For other situations that apply or details about your rights, go to the US Department of Labor’s FMLA website.)

The hospital will probably have handouts with more information, too, and patient representatives who can explain your rights to you.

  1. Consider patient advocate options.

If you are confused by the medical mumbo jumbo, too sick to try to interpret it, or even too stressed to deal with it, a patient advocate can help. Patient advocates work to make sure that you get fair treatment. Their job is to talk to the hospital billing department, talk to the insurance company, talk to the mail order pharmacy, etc. They make some of the long, frustrating phone calls to try to lower your bills, increase your coverage (or make the insurance cover what you qualify for), and find you the aide that you need. Since this is their job, they have more clout, and they know better what the companies can and cannot afford.

Some medical centers have patient advocates in-house that can help you. There are also charities with advocates that you may qualify for, including charities dedicated to your specific cancer. If you have the funds, advocate agencies are available for hire. Wherever they’re from, they can take a big weight off of your shoulders by taking part of the burden.

For a more complete explanation on advocates, check out the Wikipedia article, Patient Advocacy.

  1. If you participate in a study, know how that affects your bills.

Participating in a study can a very good idea. Depending on the study, it can give you access to experimental treatments that may be more effective, and it can help future cancer patients get better treatment.

At the same time, you need to be aware of what the study will cover financially. Most likely, the study will cover any experimental medications and extra blood tests or scans. They may offer some travel reimbursement, but most likely, they will not cover anything that would be part of your treatment without the study. You will get paperwork that explains that (and many other things) that you will have to sign. Your study representative should explain it to you, but I recommend reading it yourself so that you know what is covered and what isn’t.

You need to know because your insurance may not cover certain things if they are done only for the study and would not have been done for your regular treatments. Your study representative may need to clear the study with your insurance before you start it, and if it gets to be a problem, you can drop the study at any time, including the time between when you sign the papers and when you actually start treatment.

If you are confused or unsure, do not be afraid to ask questions. You’re the one who’s going to be affected by the treatment and the billing, so you need to know.

  1. Look into financial aide options.

Ok, you’ve gotten all your benefits from the insurance, but with most policies, that doesn’t cover everything. Mine covered 70%. If you don’t have 100% coverage or a maximum out of pocket, odds are you have bills left. If your income is high enough, you can either pay them or set up a payment plan through the hospital or medical center. But what if you can’t afford it at all? It’s not like they tell you how much it costs before you start treatment.

State and national government programs offer medical financial aide based on need. Depending on the program, that may only be available if you’re under the poverty line. Each one has specific qualifications, and the hospital usually determines your eligibility once you file. If you think you’re above the poverty line but still can’t afford your bill, file anyway. First, if you’re working fewer hours than usual, you may qualify for parts of your bill if not all of it. Second, hospitals are also linked to charity organizations and use the same application to see if you qualify. If you do not qualify for government aide, you can still qualify for charity.

Oh, that sounds like work. Well, even if you do not have an advocate, most hospitals will have a financial aid office or financial aid advisors with offices close to chemo treatments – if you’re not sure, ask at the information desk. These people can help discuss your options and help you apply. Since the application probably requires proof of income, they can even check to make sure that they have everything they need on file.

If you do that and still need help, there may be other options. If your illness is long-term and keeps you from working, you may qualify for disability. If you belong to a church, it may have a charity in place or know of one. Other charities related to your illness or area may help. And if all fails, you can do a private fundraising event on facebook.

The main point is that there are options available to help, and the hospital and advocates can help you find them. Do not be afraid or ashamed to use them. If they’re willing to pay for your treatments, think of it as one less worry on your plate and move on.

  1. Organize your medical information.

As you go through treatments, you will get a lot of paperwork: visit summaries, treatment calendars, medication lists, lab results, scan results, insurance coverage, bills, etc. You’re going to want to keep all of that for both medical and financial reasons.

Even if you put it all in a box, you will thank yourself for keeping all your medical information in a single place. A binder or filing system is better because it is organized and easy to find different sections. When you need information in a hurry, you do not want to have to dig through piles, search your house, or freak out because you can’t find the paper you need.

You may also want to keep track of phone calls and discussions with different representatives. When calling about financial aide or billing, you may get one answer one day and a different answer another. You want to have a record of who you talked to on what date and what was said. That way if anything comes into question later, you know exactly what you were told.

When you have cancer, hospital bills are a fact. There’s no stopping them. But you can cut down on the stress and hassle that goes with them. When you’re getting treatment, you should be focused on getting healthy, not worrying about the cost.