Why Bother?

This week, I feel like the hospital is telling me I should have let the cancer kill me.

I was told going in that I was poor enough that financial aid would cover it. They did for a while. Then, they decided I no longer qualified.

In total, my remaining bills are over 80% of what I made last year. When I called billing 2 months ago and pointed that out, they told me they didn’t understand why I no longer qualified for financial aid and that they didn’t think I could even afford the minimum payment that the hospital would require. They recommended that I reapply for assistance.

I did what they told me to do. I even called them back to let them know that I had reapplied so that they could reset my account to keep it from going to collections. I was told they had done that.

I got a notice from 2 collections agencies this past week. It says on the paperwork that it takes 180 days after the debt is made for it to go to collections. That’s 6 months. It has not been 6 months since I was told the account was reset. When I called and told them that, the woman told me “You shouldn’t have been told that.”

Like I was lying. Or like their telling me they’d reset it didn’t matter because the person was wrong.

So I can’t even trust what they tell me when I call them specifically for help? It’s been barely over a month since I last talked to them, updating them and asking what I needed to do. They never once told me I needed to make some sort of payment or set up a payment plan or whatever I would’ve needed to do to keep it from going to collections.

I can’t even describe the feeling that causes. Despair is too mild. The helplessness and hopelessness of calling and trying only for it to mean nothing is too much. It’s simply too much for my brain and my already stupid emotions to deal with. It makes me cry without being able to make a sound. It makes me rock back and forth without knowing.

It makes me wish that I hadn’t bothered to get treated in the first place.

Go Bald Or Cover It?

Note: This article is aimed at women going through chemotherapy, but most of it’s applicable for anyone going bald, male or female, regardless of the reason.

If you go through chemotherapy, chances are you will lose your hair. Some people have a hard time with this because you do look very different bald than you do with your hair. It’s not a you that you’re used to, and it can be frustrating and upsetting. But it’s not a side effect you can change during treatment.

One of the best ways to deal with this problem is to find a look that you’re comfortable with. One that you can go out in public in without feeling self-conscious and without feeling like it’s not you. I’m going to list all the types of head coverings I’m familiar with and give you some information to help you decide which one is right for you.

Wigs

If styling hair is part of what makes you feel like you, if you want to feel as “normal” as possible, or if you want to hide your illness, then you may want a wig (and if you tell your doctor you may be able to get a prescription).

There are two basic types of wigs: human hair and synthetic.

This is probably synthetic.  You could get a similar style with an expensive wig or a cosplay wig.
This is probably synthetic. You could get a similar style with an expensive wig or a cosplay wig.

There’s an instinctive feeling that human hair wigs must be better. They must look more real and be easier to use. Well, that’s not necessarily true. Yes, you may be able to get a color closer to your natural hair (especially for gingers), but like normal hair, a human hair wig will need to be styled every time you wear it. The style may get flat as the day goes (like regular hair). If you really like styling hair and being able to style your hair makes you feel more normal, then you may want a wig with human hair.

If you’re happy with having a set style that you only have to put on or brush, you probably want a synthetic wig. I’m going to talk about wig store options first. They will have a variety of styles on display, and, like shoes, each style may be available in different colors. You can sit and try them on until you find one you like.

I recommend trying any style you see and like, but the styles with a hand-stitched top tend to look most real. They can be thinner than machine-stitched, and the hairs are attached to a transparent fabric. Seeing the scalp through the hair makes it look less like a wig. Some people like to get their wigs before their hair falls out to match their real color better. Others wait until they are bald. If you want continuity at work or in public, get one and start wearing it before your hair gets too thin so that the difference isn’t jarring.

If you can’t afford a wig from a wig store, you can get one from a costume store or from online (they can look real if you know the secret). If you can order online, look for cosplay wigs. They are usually better than those at costumes stores.

I’ll be honest – both will probably look awful when you try them on out of the box. The cut will look all wrong with your face, and there will be extra hair in weird places. The secret to fixing that is to take it to your hair salon. Put it on and have the stylist cut it in a style you like that is flattering (fancy wig stores will also style or cut the wig for you after you buy it if you want). With a cosplay wig in a natural color, you can get a nice synthetic wig for a fraction of the cost, including the price of the cut.

Warning: Never use a hot iron or chemicals on a synthetic wig! You can melt or otherwise damage it!

Hats

She looks sassy and feminine, and the same style hat in a different fabric could work for summer.
She looks sassy and feminine, and the same style hat in a different fabric could work for summer.

Some people find wigs uncomfortable or itchy. If the skin on your head is sensitive, you may prefer a soft hat. A crocheted or knitted cap can be very comfortable, and they come in a variety of styles and colors. They’re also good for keeping your head warm around the house (turbans, too).

If your head isn’t sensitive, you may find that regular hats are the look for you. Wide brims, chic caps, or sassy fedoras – there are tons of different kinds of hats. Some will work better with a bald head than others. If you find a style that you really like that needs a little hair coming out of it, you can even buy partial wigs to fix that. Any of the wig magazines sell them (Paula Young,  Especially Yours, etc).

Turbans

This is more of a head scarf style. It's hip, fun, and flirty.
This is more of a head scarf style. It’s hip, fun, and flirty.

If it’s summer, you may find it too hot for comfortable hats, or you may simply prefer the style of a headscarf, bandana, or turban. They are made of very soft cloth, which makes them very comfy. Since they’re mostly cloth squares or tubes, they’re usually cheaper with options available at most malls or box stores. You can get several to try and see if the style suits you. Like hats, these may also be donated to the hospital for patients who need them.

If you’re not sure how to wear one or tie one, there are plenty of youtube videos with instructions for different styles (here are some specifically for cancer patients). There are way too many options to go into detail here, but here are some images to give you a feel for the style.

No Cover

Some makeup and jewelry, and a bald head is absolutely feminine! You can see she left a little fuzz. You may prefer a close shave. It's up to you.
Some makeup and jewelry, and a bald head is absolutely feminine! You can see she left a little fuzz. You may prefer a close shave. It’s up to you.

The biggest problem most women have with baldness is that they think it’s masculine. The secret to feeling feminine with a bald head is accessories. You may find that earrings, eye shadow, and a fitted shirt make being bald plenty feminine. In fact, it can really emphasize your eyes and be very flattering. You may even decide to do something fun like get henna or an airbrush tattoo on it (neither is permanent).

It really doesn’t matter which one you choose so long as you feel comfortable going out in public. You may want to have multiple options – one for each occasion. Once you find new ways to feel pretty and look like yourself, you’ll feel much better about losing your hair.

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.

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.

 

 

Top 10 Tips for Chemo That Doctors May Forget to Tell You

As I finished my cancer treatments, I kept thinking about some aspects of caring for yourself during chemo that might get overlooked. It’s not that the doctors don’t know these things could happen, but they have a lot to tell you. Their first priority is to make sure you know the signs of more dangerous side effects, so that’s what they emphasize. They also don’t know in the beginning what side effects you might have. Why bombard you with information you may not need?

I can’t cover everything either, but here are my top ten tips that I feel get overlooked or forgotten. Or that I think are important enough to say again. I’m going to count down to the most important ones, starting with number 10.

10. Set up a place to nap before treatments start.

In most cases, chemotherapy involves injecting medication into the veins to target rapidly replicating cells. Most chemo drugs cannot tell cancer cells from other fast growing cells (like hair). As a result, the body has a lot to do after chemotherapy: replace cells, get rid of dead cells, process the chemicals, etc. That’s a lot of work, and it takes a lot of energy.

Even if you’re in peak physical condition, you may find that yourself extremely tired on the days following treatment. You may need frequent naps in between activities. If your bed is readily available, that would work. A recliner chair or a couch is also good, especially as you get further from your treatment and need to nap less often (I also recommend sleep masks).

Whatever location you chose, you will likely want to have a cover for it that is easily washable. Chemo has a distinctive smell, and since a side effect is increased sensitivity to smell, you will want to wash that smell out once the chemo is out of your system

9. Use the anti-nausea meds the way the doctor tells you to.

You may be prescribed multiple medications for anti-nausea before you even start treatments. If you look them up, you will find that they are not traditional anti-nausea meds. Their anti-nausea properties are unique to chemotherapy (Believe me, they work).

Since this use of the medication is different from the drug descriptions pharmacists have, the pharmacy may say to take the drugs differently than the doctor did. Follow what the doctor said. If you really need to double check, consult a different cancer doctor from a different hospital.

If the doctor gives you two prescriptions and says to alternate them every four hours, he or she means it. Alternating lets you take medication more often and stay ahead of the nausea. Don’t wait until you feel nausea to take the meds. By then, it may be too late, and you will already have thrown up (and may not be able to keep the meds down). You will learn after the first few treatments when to expect the nausea. On those days, take the meds as prescribed, and you will have far fewer problems with nausea.

8. Eat yogurt with live cultures and/or take probiotics.

Your body might handle it fine the first few times, but processing the chemo can kill the healthy bacteria in your body. In you lose enough, you’ll get digestive problems (in addition to yeast infections and urinary tract infections).

Some of the most common side effects of chemo are nausea, vomiting, diarrhea, constipation, and acid reflux. Clearly, the digestive system takes a hard hit. Eating yogurt or probiotics can help it recover and can prevent or reduce some of these symptoms – I did not experience all of them, but his definitely can help the acid reflux, and it can also help with the issues mentioned in number 7.

Most doctors have nutrition information available, too, if this becomes a problem.

7. Get bathroom wipes and use them after treatments.

Invest in some wipes, preferably ph balancing, and use them at least every other time you go to the bathroom when the chemo is passing through your system. The medication can kill the bacteria around genitals the same way it kills the bacteria within your digestive system. Again, when the good bacteria is reduced, bad bacteria can get a foothold.

Having a yeast infection or urinary tract infection on top of chemotherapy is not fun (you do not want to be on antibiotics on top of everything else if you can help it). Using wipes removes more of the chemical than regular toilet paper, and the ph balancing (you may want a ph balancing wash, as well) will help your system recover.

The longer you are on treatment, the more help your body will need to recover, so start before it becomes a problem. Even if you don’t worry about the ph balance, using the wipes will help keep harsh chemicals from building up on tender flesh. Trust me when I say you will be much more comfortable. And why deal with more discomfort than you need to?

6. Pay attention if you start developing aversions.

Even if you do not get extremely sick from the chemo, your body may take a subconscious dislike to it. I think of it like when you order a specific food, get food poisoning, and get sick whenever you smell that food after that. It’s an ancient defense mechanism where your body smells or tastes something it associates with danger of illness, and it makes you sick to try to avoid the illness.

Well, chemo makes the body work pretty hard. It puts a lot of stress on the system, and chemo patients can develop smell aversions to smells associated with the treatment. One of the most common aversions is to the smell of the treatment area. Your body knows it is getting chemo and can make you sick before treatments start. You can also get aversions to things you eat regularly while on chemo.

Planning when you eat makes a big difference. Many hospitals will be glad to provide you with food. That’s fine, but if you start feeling sick whenever you think of a food you often eat before treatment, you’ve probably developed a taste aversion. You may want to avoid eating your favorite foods right before chemo. The same is true for wearing your favorite perfume. The main idea is that you do not want your body to associate that taste or smell with chemotherapy.

If prevention doesn’t help, medications might. Some smells are unavoidable (like the chemo itself, rubbing alcohol, etc). Again, the doctors have dealt with it before and will do all they can – so tell them!

5. Tell the doctor or nurse if you have increased sensitivity to taste or smell.

If your sense of smell or taste suddenly becomes much more acute after a treatment (making eating and drinking difficult), tell your doctor.

After about my fourth treatment, my sense of smell became so acute that drinking water was difficult because it smelled weird or wrong – even if I got a new glass and rinsed it before filling it. I assumed that it was an expected side effect and that nothing could be done about it. I was wrong.

When the doctor asked if anything else was new, I mentioned it offhandedly, not expecting anything to come of it. When he heard that, my doctor added an anti-nausea drip (iv) to the medications I was given before starting the chemo treatment. I didn’t see how more medication before the treatment would stop something that didn’t happen until days after the treatment, but it did.

I have not had this problem since, and I’ve had about 8 more treatments. I won’t say that doctors can prevent all side effects or even that the side effects may not come back as the treatment continues (and has cumulative effects on the body), but don’t assume that the doctor can’t help. It’s always better to ask and give the doctor a chance to help. That’s what you’re paying them for!

4. Don’t plan things for right after treatments.

Do not schedule anything important after your chemo. Most nurses work hard to reassure you and make your treatment as safe and painless as possible, but they cannot control how quickly the pharmacy will make your meds. They cannot make the veins on your arms bigger and able to take the treatment faster.

The chemo could take 5 hours; it could take 10 hours (including a lot of sit-around-and-wait time). You don’t know. The nurses don’t know. Buying a plane ticket for an hour after your chemo is supposed to end adds unnecessary stress to you and your nurses. Rushing them isn’t a good way to assure a good treatment. Plan to take your time.

3. Do not be afraid to get a port.

Like I mentioned, treatment may be difficult with smaller veins. Some of that depends on what treatment you are on and what chemo you are getting, but on the whole, it can cause discomfort or even vein issues that can last after treatment. Some people’s veins are big and strong enough that they do most of their treatments by iv. Others are not.

If the nurses working on you have trouble and recommend a port (or pick line), talk to the doctor about getting the port in soon. A port is an access point for drawing blood and injecting the chemo. From that access point, a catheter runs into a large vein directly (often the jugular). The surgery to put it in only took about 10 minutes, and they could use it a week later.

The treatments went much faster and smoother after that. The side effects and discomfort around the veins were not an issue with the port, which meant a faster recovery and less arm sensitivity afterwards.

2. Carry an updated medication list in your wallet or purse.

While medical staff does their best to keep an up-to-date account of your medications and treatments, it never hurts to have the information with you. That way, if there is any confusion, you have the most up-to-date answer with you.

It can help at the doctor when your normal doctor is on vacation and the temporary doctor is trying to go off of notes. It can help at the pharmacy when the dose has changed for a medication, but the pharmacy has two active prescriptions for you (and isn’t sure which one you need). In the case of an emergency, it can also help at the ER.

The point is that it is useful information, but with all those complicated names, it can be hard to remember. Make life easier for yourself and carry a list.

1. If something changes, tell your doctor.

To me, this is a no-brainer. If something strange and unusual happens, call and let the doctor know. They may have you monitor it and call back the next day. They may have you come in so that they can look at it if it’s something more serious. They may send you a new prescription. They may send you to urgent care. I have had every single one of these happen after a call to update them on a new symptom.

If you’re not sure if the change is important enough to call, you can look at the paperwork they give you for each medication. In that paperwork, there is a list of symptoms that says to call the doctor if you get any one of them. But if the symptom worries you, go ahead and call.

Personally, I would rather ask the staff and find out it’s not worth worrying about than not ask, worry until my next appointment, then find out it was something they would’ve wanted to see.

Use your best judgment, but don’t by shy about using this resource. There is generally a line just for patient calls, and the nurses know where they can direct you and whether it’s a question for the nurse practitioner or the doctor. For you to get the best care, the doctors need to know what is going on. They can’t make adjustments to treat or prevent problems if they don’t know about them.

 

That’s the list. I hope it helps and wish you all the best of luck!

Not All Cancers Are Created Equal

I’ve started calling cancer “the C-word” because I’ve found that to most people it is a very frightening word. Almost all of us have had a friend or family member who had a terminal, aggressive cancer. Even if it was our best friend’s great-aunt that we didn’t really know, we have this impression that cancer is a painful, wasting disease that is incurable. We also have the impression that the treatments are painful and sometimes only make the patient sicker.

That is what we think of when we hear cancer, and the thoughts are frightening. We don’t want to think of anyone we love going through it. The fear can be huge and hard to deal with for everyone.

Well, sometimes cancer is like that, and sometimes it isn’t. If you believe anything I have written here, please, believe this: Not all cancers are the same. Cervical cancer is not the same as breast cancer. Neither is the same as small cell lung cancer. None of the above are the same as ovarian cancer. Treatments vary even more because they are different for each cancer, and they are different for each person! Weight, height, age, health – it all plays a factor in how your body reacts to the cancer and to how you will be treated.

Don’t assume that because you or someone you know has cancer that they are incurable. Some of the most common cancers have treatments with high success rates (some are 90% or above in early stages [Six Highly Treatable Cancers]. Even more aggressive cancers can be successfully treated. And some people react better to treatment than others. My treatments went very well with few side effects, and I had a stage III cancer. I’ve heard of others who continue working full time through their treatments.

The point is that even with the same cancer, each person’s response to the cancer and the treatment will be different. I know of two women of similar age who were diagnosed with the same type and level of breast cancer in the same year. One woman’s treatment went fine with few complications, and the other woman had all manner of complications before the cancer was finally defeated.

So please remember: Every cancer and every person is different. Thinking of the biggest, scariest example of cancer you know is not going to help anyone when you’re dealing with a different person and a different cancer. Not all cancers are created equal. I know it’s hard, but stress doesn’t help healing. Running horror stories through your mind of other cancers and other people only builds more stress that you don’t need. You’re dealing with this cancer and this person. They’re not the same, and frightening yourself does not help anyone.