It is hard to believe the end of the summer is here, and there are no words for how excited I am about the end of our application freeze! Since we started accepting applications again on Tuesday, they have been pouring in. Cancer patients from New York to California have been writing in and asking for help in feeling like themselves during their cancer treatment. We ask every applicant what obtaining a high-quality wig means to them, and their words are so powerful in articulating why we do this work:
“It means that at least one aspect of my appearance will look like I did before my illness. It will give me confidence to carry on. It will also allow my children to see me as they remember. Not as mom who is sick. My children are my world and if I can continue to have somewhat of normality it will make the fight ahead that much easier”
“It will give me confidence to go out in public and feel pretty.”
“It would allow me to go to church, and to cover my hearing aid.”
“Throughout my cancer, my main concern are my boys, 12 and 14. I would like to feel confident enough to attend their school/athletic functions. I need to return to work as soon as possible after my [treatment.] Having a quality wig will help me return with my head held high…”
I realize that wigs are not medicine and they aren’t magic, but I have personally seen how important and meaningful a great wig can be in enhancing the quality of life for so many cancer patients, and the sad fact that they are out of reach to so many cancer patients was just devastating to my mom and what led her to want to find a way to make a difference in this way.
Beyond this, the seemingly small matter of finding and purchasing a comfortable wig that actually resembled my mom’s hair proved a challenge that none of us were prepared for. First, the internet seemed to be buzzing with all things cancer-related except for information surrounding the dreaded side-effect of hair-loss.
All my mom was told was that she might lose her hair. The doctor said this almost nonchalantly, as part of a seemingly well-rehearsed list of side-effects that he rattled off. I immediately saw the horror invade my mom’s eyes. She was just wrapping her mind around the new reality of being a cancer patient, but it hadn’t occurred to her that this new, vulnerable state would be revealed to everyone around her on terms other than her own, that she would be betrayed by her own bald head and eyebrow-less eyes before she had really processed what she was dealing with, before she was ready to share.
Unfortunately, our research revealed little more than the doctor. The internet was full of poignant, powerful blog posts from women about shaving their heads, of embracing the bald and beautiful look. They were so inspiring, but not exactly informative about the nitty gritty of what to expect. We had so many questions… How do you know if you are one of the lucky ones who won’t be affected by hair-loss? (Answer: You don’t, generally, but the doctors and nurses usually have a good idea of your specific chemo regimen will lead to your hair falling out or just thinning). If you will not be so lucky, when can you expect the first strands to fall out? (Answer: Usually, you can expect to lose your hair after the second treatment, but every treatment and every patient is different. Be sure to ask the doctors and nurses administering your treatment what their experience has been with other patients receiving your regimen). Is there a warning, a feeling that accompanies this, and will it hurt? (Answer: Often, patients report a tingling, aching, or tightening sensation as their hair falls out). We found very little information that spoke to any of these questions.
And then there was the matter of finding a wig. The doctor wasn’t a wealth of information in this department either. He had simply handed my mom a prescription for a “cranial prosthesis,” which, we were told, was the insurance code for “wig.” We assumed this meant that the wig would be covered by insurance, and took his brevity on the subject to mean that obtaining such a wig would be a fairly simple process.
We found the web to be full of online vendors hawking wigs described using adjectives that we had never heard before (remy, lace-front, monofilament…) and ranging so drastically in price that our heads were spinning. Some were advertised as synthetic, some were said to be made with human-hair, and pretty much every one of them was supposedly of the highest quality. Wig shopping seemed to require an education that we didn’t have nor want to have. We decided that buying a wig on the internet was too risky with the little information that we had, and started to look for a shop.
It turns out that my mom was luckier than many cancer patients, as there were a few reputable wig shops near her suburban Washington, DC home. My sister and I picked one, and all three of us braced ourselves for an emotional afternoon. It was one of my mom’s first outings after major surgery, and she was still in a sort of fog, but the experience of wig shopping with my mom and my sister is singed in HD quality on my memory now, 4 years later. It was just a wig we were shopping for, but the act of looking for the wig was so much more loaded than that. Going to buy a wig made the cancer diagnosis more official somehow, and we all dreaded it.
But when we walked in the shop, it actually felt like a weight was lifted. The place didn’t feel anywhere near as scary as we had imagined, and actually had the familiarity of a hair salon. Sure, the hair the stylists worked on weren’t attached to heads, but the smells of shampoo, hair dye, and product filled the air along with the sounds of hair dryers and women talking about their lives. We all relaxed a bit more after we were cheerfully greeted by a receptionist and a stylist, who immediately got to work.
She started to explain the pros and cons of this wig and that to us, and started to pull wigs for her to try on. As she worked, she put my mom at ease by telling her positive stories about other women with similar diagnoses, and, most importantly, providing her with concrete information about what to expect where hair loss was concerned. From her, we learned that my mom actually had a good chance of keeping most of her hair on the chemo cocktail that was prescribed to her, that if her hair was going to go, it was likely to start to fall out after her second round of treatment, and that she would know it was coming by an aching, tingling sensation in her scalp. Knowledge really is power, and I saw my mom immediately relax when she was told what to expect.
The stylist went on to teach my mom the basics of buying and caring for a wig, and before long, my mom found a wig that looked almost exactly like her own hair. The stylist made the match even closer by adding some highlights and trimming the bangs.
With her new wig on her head, my mom posed for photos that my sister and I took on our cell-phones and texted to our stepdad. I can’t find those photos, but I remember the genuine smile on my mom’s face in crystal clear detail. It was the first time that she had truly smiled since she woke up from surgery three weeks before, and my sister and I beamed at her suggestion that she might like to give the wig a test-run at a movie later that night. We had been trying to get her out of the house for days, and she wouldn’t budge. It seemed that having this new wig gave her back some of her footing, a sense of a security and control that she hadn’t felt since she heard the words “you have cancer.”
The experience was dampened a bit at the register, when my mom handed the receptionist her prescription and we were told that insurance would likely cover only a small percentage of the $1700 wig. Regardless, my mom had to pay the amount in full and wait for reimbursement. We had assumed, based on the doctor’s actions, and the wording of my parents’ insurance policy that this was cost that was recognized and covered. Months went by before the measly $300 reimbursement came in the mail. Considering how well-insured my mom was, we were floored.
Thankfully, my parents were financially sound enough that this exorbitant cost of the wig was not a huge burden for them. Throughout my mom’s treatment, however, she constantly marveled at how the wig remained an integral part of her sense of wellness, and it made her extremely sad that the great majority of many cancer patients couldn’t afford the very thing that made her feel so empowered, so much like herself.
A constant optimist, my mom never forgot to count her blessings, even as she endured more than 20 treatments, and her condition became more and more grave. Thanks to her wig, she lived her life as fully as possible right up until the end. She was able to go on some great vacations, attend weddings, throw parties, and to meet my son and her first grandchild.
There is nothing better than being able to tell a Lolly’s Locks recipient that we will able to take on the cost and burden of wig-shopping off of them. It just never gets old to see these patients, in their wigs, doing all of the things they always did, not missing a beat due to feeling self-conscious or fear of their cancer being center-stage in every interaction.
A huge thank you to all of our supporters and generous donors for helping us give this important gift to the most beautiful of people- with or without their hair!- everyday.
[If you would like to make a donation to Lolly’s Locks, you can do so here or by giving to our Indiegogo Campaign, which will make it possible for us to fund 10 wigs- and will result in your receiving some great Lolly’s Locks swag!]