Living with Whimsy: Hidden Costs of Cancer

Friday, January 26, 2018

Hidden Costs of Cancer

I read part of a rant online the other day about people that raise money for medical needs when they have insurance to "pay for it all." I only read part of the rant because it made me angry and I don't have room in my head for negative thoughts right now.

We have insurance, and we are very blessed to have it. After we meet our deductible (which happened with my very first day of scans this year), we pay 20% of everything else until we meet our out-of-pocket maximum, which will be any day now when the claims catch up.

What insurance doesn't pay for is all of the hidden costs of cancer.

I can only speak specifically for breast cancer, and more specifically for me and my type of breast cancer, but we've already run into a lot of hidden costs. And I'm still at the beginning of my treatment. I'm sure as we get into surgery, radiation, reconstruction surgeries, and hormone therapy there will be many more.

Here are the hidden costs we've run into - so far - with my cancer:

A complete wardrobe overhaul. I was never a fan of button-up shirts before cancer, but with port surgery and chemo, I wear a lot of (new) soft flannel button-ups. Along with those, I purchased leggings, cozy sweatpants, and fuzzy socks. Layers are also important - zip up hoodies and soft cardigans. All things that I can get on without pulling them over my head since I couldn't raise my arms well after my biopsy or port surgery. They'll also come in handy after my mastectomy. I just bought a few loose V-necks, too; I can raise my arms now, but need to leave my healing port area to air out since the skin around it is still peeling due to my adhesive allergy.

New bras - wireless, yet supportive, and front-close. (See above, re: not raising my arms. Front close is also much easier when you are too tired to get dressed without a break after chemo.) Button-up pajamas, also.

I just had my second chemo treatment and my head is feeling tingly/itchy, which is a sign that my hair will be going soon. I have an appointment in a few days for my awesome hair guy, Jason, to shave my head (there will be photos!), and have purchased and been gifted a hat collection to be prepared for months of baldness. I also bought an all-natural baby shampoo to use on my scalp to keep it healthy and clean for those months.

Another side effect of chemo is incredibly dry skin. I stocked up on heavy duty moisturizers - face and body - to combat the dryness. I also bought aloe-infused socks. Radiation will come with its own challenges; I don't know if I'll have prescription creams for that or not.

Chemo can make your nails painfully lift off your fingers/toes and then fall off. A way to combat this is to use nail strengthener & dark polish along with ice mitts and ice socks during infusions. Those are not covered by insurance. We also purchased a small rolling cooler to transport the ice mitts, etc. to the infusions.

My cancer is ER and PR positive, which means that it feeds off of hormones. I need to switch all of my beauty products to natural ones that will not affect my hormones. That means eye cream, face lotion, night cream, body wash, shampoo/conditioner, etc. None of that is covered by insurance.

I'll be attending a Look Good Feel Better class (run by the American Cancer Society) in about a week. Friends tell me that they encourage you to throw away all of your open makeup due to the bacteria that grows on it. In a healthy person that bacteria isn't such a big deal, but in someone with a low white blood cell count, that can be a problem. It will all need to be replaced with new, natural makeup. I've also had to purchase eyebrow makeup for the first time in my life since my eyebrows (and lashes) will fall out.

Other costs we've incurred: books for the kids to help them cope with what's going on; a large Kindle and earbuds (and earbud holder) to watch shows during chemo; gas to and from all of the appointments; extra groceries for visitors and for my cravings to keep calories up; a vest since it was easier to get on than a jacket with sleeves; more printer ink to print out forms and test results; and hard candies and snacks for the infusions.

We're learning as we go, and Amazon Prime is more useful than ever right now. (If you'd like info on any of the products we've found useful, let me know and I'll send you a link. I don't make any money off of it - I'd just like to be helpful.)

So to everyone who has sent gifts or donated to the GoFundMe (Linked on the right - please share it!), thank you, thank you, thank you. Your support, encouragement, and prayers are more helpful than you know. You're enabling us to get through this without panicking when we open the mail.

My 2nd infusion (2/12 Taxol) is done and went fine. I do need to call my MedOnc to see if they'll lower the steroid dosage for the next infusion, because it makes me woozy. Otherwise, all is going well.