I Survived Cancer and Then Donated My Hair

About a year ago last summer, I decided to take a last-minute, cross-country road trip with one-year-old twins to see family prior to moving to South Korea. One morning I woke up in my childhood bedroom in Lafayette, Louisiana and decided it was the day I wanted to fulfill a long-term goal I had held since I shaved my head during chemo almost exactly three years prior: I donated my hair. I called around to my friends and asked for a salon recommendation since it had been several years since I lived in Lafayette. A few people recommended Morgan at Spa Mizan, and she miraculously had a cancellation and could take me that day. What I didn’t know is that she was also a young adult survivor of cervical cancer, and was very pumped to help me achieve this dream. She took her role very seriously, and carefully read through the hair donation requirements before measuring out my hair. She ultimately decided to maximize the length of my hair donation by dividing my thick locks into two pig tails. Fortunately, my childhood best friend and occasional guest blogger, Allison, came with me to document the event and you can see the results here. The three of us had all been affected by cancer very directly in different ways, and I was really honored to be able to share this experience with them.

Although I chose the day spontaneously, I took the decision to donate my hair very seriously. One of the first things I did was choose an organization to donate my hair through. A lot of people have heard of the organization, Locks of Love, which donates hair systems to children with long-term hair loss, primarily benefiting children with alopecia areata. However, several organizations are out there that accept hair donations. A great list is available here. All are great organizations, so if you are interested in donating your hair, my advice would be to research their missions and requirements to decide which one fits your needs best.

I ultimately decided to donate through Pantene’s Beautiful Lengths program for a few reasons. The main reason is because they work with American Cancer Society specifically to provide free wigs to women with cancer. Many of my friends and their loved ones had received hair replacements through this program. I really felt called to support them since I had witnessed the benefit of their program firsthand, and I really wanted my donation to benefit a cancer fighter. My other reason for supporting the program was much more practical. The Beautiful Lengths program only requires an 8-inch pony tail, while most other hair donation charities require 10 or 12 inch pony tails for donation. Since I am a pixie girl at heart and my children love to tug at my hair, I knew my patience for growing out my hair was going to be minimal – so planned accordingly. To my surprise, I ended up with two 10-inch pig tails to donate, but ultimately decided to donate through Pantene’s Beautiful Lengths program because of their service to the cancer community.

Once you choose the program you want to donate through, it is important that you follow their recommendations for taking care of your hair while you grow it out. According to a rather outdated New York Times article, as much as 80 percent of hair donations to Locks of Love in 2007 were unusable because people didn’t follow their requirements. If you really want your hair donation to go toward someone in need, it requires a long-term commitment. You generally have to avoid coloring your hair during the time it takes to grow it out (in my case 2.5 years) and maintain it with regular trims and conditioning. Pantene provides a great resource on how to prepare your hair for donation here. If you are interested in hair donation, please do your research and make sure you are willing to make that commitment. If you aren’t able to participate because your hair is color-treated or for another reason, there are many ways you can participate, such as making a monetary donation, or volunteering to create awareness for the program by recruiting participating salons and/or hosting hair donation events.

I really loved growing out my hair and felt elated by returning to my pre-cancer, pixie look. In the process I hope I was able to create some awareness, both for hair donation and adolescent and young adult cancer issues. I hope this blog post will provide some great resources for anyone considering hair donation in the future!

 

 

 

 

 

 

Rough Week

Chemo brain has thoroughly set in, so if this post is a bit stream of conscious, bear with me! My second round of chemo worked the opposite of my first. My first round, I felt off for the first 4-5 days, had some isolated nausea and other problems the first couple days, and then felt pretty much great until my next session after the fifth day or so (with the exception of a migraine that may not have even been related to chemo). This session, I started off feeling fairly well for the first 4-5 days and then things went down hill after that. I went back to work on Tuesday morning feeling fine, and was there for about an hour and then immediately got sick and stayed sick until this morning. My nausea went from being nonexistent prior to Tuesday, to being pretty steady until today. I’m really over having to discuss my nausea and bowel movement appearance at length, so I’ll spare the blog community from this.

Prior to my battle with nausea, I did have several really good days which I’m very thankful for. Rene and I did quite a few errands over the weekend and had a board game night with some other Army couples that live in the area and also commute to Fort Hood. My sister, Marisa, came to stay with me for my second chemo so it’s been extremely nice having her around to help out with things. We also went to church and took my in-laws out for a late Father’s Day meal on Sunday. They also gave us and set up a new grill for our 2 year anniversary (which was Monday!) Overall a great weekend, but I think I overdid it which lead to my rough week.

Adding to the problem is that a couple days after my second chemo, my less than 2 year old scottish terrier (Frasier) was diagnosed with mange. If anyone has never dealt with this (and I hope you don’t), it. is. awful. The poor thing is on more medications than I am. The vet put him on an anti-anxiety (3x/day), anti-itch (3x/day) and anti-biotic (1x/day). We also have to treat him with advantage multi once a week for two weeks, and also give him baths with a medicated shampoo 2x a week until it clears up. I’m not supposed to interact with the animals much at all due to risk of infection, so Rene & my sister have been bearing the brunt of it. I really sympathize since prior to chemo I itched all over for about 2 months. I’m really worried his immune system is suffering because he’s picked up on the cancer stress in the house, and it really makes me feel awful. It’s taken about a week, but luckily Frasier’s skin has cleared up quite a bit. The poor thing has several bald spots though, which brings me to the next topic: hair loss.

A few weeks ago I started my journey trying to find a wig and get TRICARE to pay for it. Luckily, due to the amazing ladies at P&H Services in Cedar Park, I was able to get TRICARE to pay for one wig. As I’ve mentioned on here before, TRICARE was a bit difficult. On their website it was pretty easy to figure out that they were supposed to pay for a one wig, one time for a cancer patient. When I called to ask about this, they said my primary care manager (PCM) needed to make the referral. They did not explain to who the referral needed to be made or where to go to find participating vendors. When my PCM called them to ask how to do that, they told her that she just needed to write me a prescription and I could take it into a medical supply shop. However, they did not give her a list of any participating medical supply shops. Through some lucky Googling, I found P&H Services and left a message on their online form basically saying, “Do you know how I can get TRICARE to cover a wig? Please help!” Luckily, they were able to liaise between TRICARE and my PCM and get the proper paperwork taken care of without my further involvement (Praise the lord!) Long story short, is that yes, to get TRICARE to pay for the wig your PCM does need to make a referral to the medical supply shop but it seems like you’re able to choose which one you go to. I’m just glad that I found one that knew what to do and could handle it without needing me to do anything else.

So  I approached Operation Find a Wig very much like Operation Find a Wedding Dress. A couple of weeks ago I started my wig journey with my friend Megan. Megan is a friend of mine from Lafayette who also ended up in the Austin area around the same time I did. She’s also an aesthiology (skin care professional) and the first person I thought of to come with me to look for a wig. We tried on pretty much every wig at P&H and took pictures. I then sent the pics out to my close friends and family, but I really wasn’t ready to make a purchase until I had my mom with me. I also requested a few more wigs in different colors closer to my natural hair color as well. P&H offered to order these for me without charging me since they needed some new ones for inventory. Luckily my mom came into town on Sunday and we went wig shopping on Monday. I slept on it a night and ended up purchasing this one on Tuesday:

This is the Jon Renau HD Flame wig. These wigs are awesome because they  can be styled.

This wig worked well for me because its easy to part and my mom and husband were both comfortable with it because its similar to how I wore my hair in college.  I had considered going curly or with a drastically different hair color, but in the end it was really important to me and my family that I looked like me. It came in at the perfect time, because my hair started falling out last weekend. Luckily, I was blessed with a head of thick hair, so it wasn’t immediately apparent. But I personally hated the constant falling out. And because my hair is so thick, it was pretty much constant and had the potential to drag out for a very long time. When I came home from work sick on Tuesday, I was ready to shave it. My mom and Rene took an extra day to be convinced, but on Wednesday evening we all agreed it was time.

(Pastor) Amy recommended I go see her friend Bethany at Super Cuts. This was even more perfect than Amy realized because Bethany told me that she shaved her head when her mom went through chemo 5 years ago. She really empathized with us and kept telling me how brave I was the whole time and that it was okay to cry if I needed to. Marisa took a video of the shaving process, but since I don’t want to pay WordPress to post it you can see it on my Facebook page at www.facebook.com/TheLymphomaLetters.

Before: Waiting in the lobby for my shave

After: I posted this one to Facebook after my shave and really appreciated all the supportive comments I received! It really made me feel that I was still beautiful!

As we headed out from Super Cuts Bethany told us that one of her other clients has paid for my hair cut and not to worry about it. One thing about cancer that I’ve noticed is that every time I’ve reached a really low moment, people always find a way to show me how wonderful they are. And God shows me that he’s still with me no matter what.