It would be a really bad time for me to commit a crime right around now. I leave a trail of DNA everywhere I go, not unlike the witch in the Bugs Bunny episodes does with bobby pins. Whatever I did, I wouldn’t get away with it. The DNA is my hair. Despite all my big talk and vigilance about not choosing drugs that would make my hair fall out, my hair is falling out. First in strands, now in handfuls. As far as what cancer treatment can bring, this is my nightmare returning to life. With a nod to my cancer warrior compadres fighting the fight and courageously sporting a free scalp, I don’t want to look like you. I’m fairly certain you don’t want to look like you (as far as the lack of hair goes), but for many drugs, hair loss comes with the territory. To me, it’s a terrible, cruel component. To me, the lack of hair tells people you’re sick. I’ve fought that label with pretty good success for more than four years now, but now, if it continues to go at the rate it’s going, my hair will give me away.
And this was just the beginning.
Nothing anyone can say or do will make me feel better about this. Or worse for that matter. Still, I ask you not to minimize my horror. It IS that bad. You probably DON’T know how I feel. I KNOW it’s going to grow back. There is always the chance that the shedding will slow and stop on its own, like it did when I was on the PHA trial for 2 1/2 years, taking a drug for which hair loss was not a listed side effect. Or when I was on the low-dose carboplatin chemo and radiation in 2013 and was promised that my hair would stay right where it was supposed to be. Lies. Turns out that every time you get chemo, your tissue is damaged and never quite gets back to full-strength. So hair loss for me from now on is pretty much a given. Again, it’s the cruelest strike for me, prompting a cartoon curse storm @#)(%&#)(@Q&W!!!!!
In 2001, I was on Adriamycin and Cytoxin, for months. At either 11 or 16 days after the first dose, my hair started falling out. I was prepared for that; I knew it was most likely all going to go. So, we shaved it all down to about a quarter inch. It was how I grabbed a bit of control over what I couldn’t control. For me, 16 years ago, it was my way of not being a cancer victim. I was in TV then, so it was months of wearing wigs on the air and around town. I’m not going to do that this time. Depending on how much hair goes, I may have Jessie shear a lot more off, but no fake hair this time. This time around, I’ll try to show strength not by trying to control or direct how my hair will go, but (hopefully) with a bit more acceptance (and resignation) and peace (eventually, but absolutely not yet. I’m still pissed).
Movies make the 5-hour infusion go a little faster.
Meanwhile, I am through one cycle of the CRLX101 trial. My WBCs and RBCs and platelets and everything else that’s measured are doing ok, which is shocking. I have to say, that blood transfusion I got a few weeks ago when my reds were low was amazing. I woke up the next morning feeling FINE for the first time in about four years. It was a bit creepy: Whose blood was it anyway? But in the end, I didn’t care. I get it now, Dracula.
I also spent Christmas in Maryland with my family for the first time in decades (although Jennifer says there was a random Christmas visit in the last few years: I don’t remember it. All five of my amazing nieces and nephews were home, and it was an indescribably special holiday full of food and cookies and gifts and cookies and yoga and cookies.
Who wore it best?
Mykonos on the 26th. Hard to believe we could still eat.
And now it’s 2018, a new year. Truthfully, on New Year’s Eve, I ate pasta at home, watched the new “Kingsmen” movie which ended at 8:07, and was in bed by 8:17. This morning, before dawn, I was at yoga. Melissa talked about setting an intention, not necessarily for the year, but for now. It was a good reminder to think about the bigger picture, something beyond my scalp. I stopped making resolutions for the new year years ago, instead choosing to set goals and life direction AND intention on a daily basis (that I can more easily remember). For now. So my intention, for now, is to make relentless forward progress (thanks, Jeremy). I am angry and distressed and disappointed about my hair, but there’s no fight there. What am I going to fight? All I can do is react this time. Like a smart therapist friend told me years ago, it’s time to feel it, acknowledge it, and let it go (not my hair, hopefully). It’s three weeks until I find out if this science experiment is making any difference at all. If yes, we stay the course. If no, I will tack and plot a new course (that no one has ever taken before). Stay tuned. #Defy.
The moon is full of hope for the new year.
And Linus still likes to kiss me on the mouth.
These pieces of your journey, while small in the big picture, are HUGE, in the moments. I actually helped start at program at 33rd st Jail, Inside Out Jail Ministries. I’m the Transition Team Coordinator, I work with human trafficking, sexually exploited, prostitution….or what ever you want to call it to sound “politically correct”. Anyway I place my girls in treatment programs, their stories are pretty awful….but my point is…..be angry, really angry, allow yourself to feel all these emotions because it’s bullshit, unfair, and Completely AWEFUL. To get to the other side of the journey we have to walk through all of it. Ive never been a fan of – it will grow back, you will rock the wig etc cause let’s be honest. Your goal isn’t to “rock a wig”. I appreciate your honesty. I pray for you all the time. I wish you so much happiness and better health for 2018. You always were a light to be around!
I love you, miss you!
Your words are so honest and so telling. Thank you for putting cancer into words we can understand and in a place where, while incredibly terrifying, not impossible to defeat. I read everything you write because you seem to have the uncanny ability to put life in perspective no matter what your struggle. Sending you love and prayers of strength to continue your fight in 2018 ❤️
Happy New Year Wendy. Your honesty in your journey is so encouraging to so many. You acknowledge that sometimes life sucks but you keep moving forward. You deal with all the feelings and then don’t give in. I wish you health joy and know that with or without hair, you are loved!!!!!
Wendy, your brilliant strength will continue to shine in 2018. Your “hair”owing experience is another step of the journey on which you’ve allowed us to accompany you. Stay the course and know your fans are rooting you on!
I remember when my mom lost her hair from chemo. Lihe uou, she didn’t like it one bit. But funny thing, she had gray in her hair that she colored and when her hair grew back it wa a completely different color…with no gray! We are rooting for you.
Thanks for your honesty, your strengt, and your great writing, Wendy. Wishing you a new year filled with happiness, good news in your trial and improved health…and HAIR!
Go Wendy!!!
I’m cheering you on in WP
Sorry about the hair
Maybe you could have some fun as a blond
Best Brave Wishes
Beth Murray
You are making history and with such courage and grace. Love ❤️ your postings. Sara
Glad u are with family for Christmas, as I had laura, Tesia and Fede.
Went to see mrs. D sing a solo at her church at Christmas.
Hugs
Transparency and vulnerability are two of my top goals for 2018. You live those words out loud with such honesty and grace and allow us to be inspired, to be true, to just be. Thank you for sharing your journey. Sending you love and healing, Wendy!
You are amazing in so many ways Wendy, thank you for sharing this incredibly difficult journey. I miss seeing your smiling face – hope to see you when we are both back in PC. Lots of love to you in 2018!!!
Hey lady, when I read your words, I can hear your voice, and for those of us who don’t get to see you often that is really special. You give so much to this world, just hoping that knowing we are here, praying powerfully for you is of some comfort. Love you bunches.
Hi Wendy,
I just shared part of your story to a young new bee at wesh:) WE teach together at the Y. Yes I am still at it!
I think I am afraid to quit:) You are incredible as always. I am praying the best over you.
Much love,
Marcia Willis
I missed my hair so much. It was not just the vanity of wanting to look in the mirror at pre-cancer me, it was the lovely, soft feeling of hair co wring my head, grazing my shoulders, brushing my cheek. One day after chemo, my daughter, eleven at the time, cuddled up next to me in bed, cheek to cheek. She took her long, thick, and so very soft hair and draped it across my head. I still remember the feeling of her hair on my bald head.
Meanwhile, we are supposed to focus on how fortunate we are that we have access to life-saving treatment. Gratitude is supposed to overwhelm our resentment of losing our hair,feeling sick, and wondering if we will feel our toes after our last infusion. If gratitude were a person, there were days I would have punched it in the face.
I understand every word you wrote. This sucks.
You get it. Thanks for articulating this.
What a fantastic description.. For me it was holding my hair, running my hands through it, twirling it when I am sleepy. It’s not vanity, it’s comforting and lovely and I was so pissed off when a quarter of it literally blew away on a windy day in Boulder and I made the decision to shave it off before fellow pedestrians were spitting out my hair. “Gratitude” for the chemo and “oh it will grow back” were the phrases that I had to walk away from before I exploded. Yes it sucks.