Everyone has told me that my hair will start falling out fourteen days after the first chemo treatment, emphasis on WILL. I await this momentous occasion with trepidation, false bravado, and magical thinking that everyone is just plain wrong.
Monday: I am aware of the fact that my hair should start falling out in three days. While sitting in the car, waiting to order a sandwich at Great Outdoors, I feel something on the back of my head. I rub the spot and think, “Great. I’m going to be bald and have a zit on the back of my scalp.”
But there is no bump. Then I realize my scalp hurts, like when you wear your ponytail too high all day and then take it down and your hair is confused as to which direction it should bend. I’m thinking this is the beginning of the end. I’ve heard this is how it starts.
My husband (who is bald) wants me to shave it off, immediately. He tells me to “own it.” He is chomping at the bit, over the moon that, finally, someone will understand how he felt when his hair started falling out in high school. I’m glad I’m talking to him on the phone and not in person so he can’t see my huge eye roll.
I tell him I’m not going to shave my head until I’m certain that my hair is really, definitely going to fall out. I’m still holding out hope that I’ll be one of the lucky ones, that Taxol won’t affect me like it does almost everyone. I know I’m deluding myself, but you never know, there’s always a chance.
Time to pull out the scarves and practice tying knots.
Tuesday: My son’s girlfriend and I have a discussion about not shaving my hair until I’m absolutely certain that it’s really going to fall out. She uses the words “clumps” and “patchy.” She thinks if I cut it really short and it comes out in clumps, I might have bald spots. If I keep it long then at least the longer pieces might cover up the patches.
Am I really considering a female comb-over for myself? Has it really come to this?
The hardest thing of all is going to be losing my eyelashes. I can imagine myself bald, but I cannot for the life of me imagine myself without eyelashes. Eyelashes are pretty, and mine have always been long and worthy of mascara. I resolve to continue wearing mascara until I have only three eyelashes left. Less than that would look ridiculous, right?
Now, losing the eyebrows is an entirely different matter. I don’t mind losing them at all. Here’s to a pluck-free next three months! And how can I complain about not having to shave my legs for the next three months?
Wednesday: My husband can hardly contain his excitement about getting to shave my head. It’s like Christmas in July. Who knew he could derive such joy from such a weird thing? Is this every bald man’s secret dream, to have their wives lose their hair and get to shave it off for them??? I’m mildly disturbed but glad he’s willing to help.
Thursday: Definitely more pain on the back of my head why I wake up. Hair still hanging tight, though.
Friday: A trip out of town has put some distance between my husband and his razor, thank God. This trip was needed, if only for that reason. For the first time, after I wash my hair, I notice a small handful of hair. The exodus has begun.
While visiting relatives in Oklahoma, including an uncle who is battling cancer, my aunt shows us photos of his curly post-chemo hair. I can only dream of getting the curly hair I’ve always wanted. My aunt’s sister-in-law, also a cancer survivor, tells me how hers fell out within a week. Her advice: “shave it all off.”
Saturday: More hair loss. An unexpected trip to the ER later that night (due to an infection where they removed the IVF filter from my neck), and seeing the semi-long strands of hair all over the pillow are proof of the truth. This is really going to happen.
Sunday: I’m not happy about being in the hospital on my “good,” non-chemo days. Maybe this colors my thinking, but I’m starting to feel very sad about losing my hair. I thought it would be no big deal. I’m actually dreading having to shave it off.
Monday: I’m released and get to go home. I tell Michael it’s time. Let’s do this.
I’m crying before he even starts shaving. I’m surprised. Why is this so hard? I realize that for the first time in my life I will be bald. I had a full head of hair when I came into this word, jet black American Indian hair my mom always said, so this is something completely new. It feels like the time I decided to ride the double loop roller coaster for the first time with my son, how I would have paid someone any amount of money to stop the ride and pull me off before we got to the top of the hill and descended into the first loop.
I do not want to shave off my hair.
He gets out the electric shaver and starts shaving. I cry the entire time. I hate it so much.
Afterwards, I look at myself and think of all the things my female friends have said when discussing this: You’re going to look great. You have such a pretty face. I can’t wait to see what you’ll look like.
I look like a concentration camp victim. I look like a bug. I look really ugly.
I don’t want anyone to see me. I am so embarrassed.
What is up with me? I’m a feminist! It’s just temporary!! I am more than my hair!!!
I am almost bald.
It takes me days to get used to the shock of seeing myself in the bathroom mirror. I wear a scarf or hat and never take it off until the lights are off. What I could hide before is now visible to the entire world: I have cancer. I could pick and choose who I let know what I was going through before. Now, there’s no hiding.
When I reached a certain age, namely 50, I noticed I suddenly became a little bit invisible. Ask most middle-aged women and they will tell you the same thing. There’s a certain threshold a woman reaches when male eyes glance and slide past to younger, greener pastures. But there is also a freedom that comes with being invisible, a more carefree kind of existence, and you learn to accept that you have to make yourself visible with more than just your looks.
But now, suddenly, people were looking at me again. Their eyes would linger just a little longer than they should, noticing my scarf and lack of hair. It wasn’t mean-looking, it was more curiosity-looking. It’s summer in Texas and she’s wearing a scarf. Something must be wrong with her.
And that’s the problem right there. I hate having to show my weakness to the world. Even against something like cancer, I hate having to show others that there is something that may be stronger than me, something I can’t fight off or wish away.
Being bald is the manifestation of the weakness one has to accept when they have cancer. It’s the loss of control that’s on display for everyone to see. Before, I didn’t have to tell you unless I wanted you to know. Chemo, in addition to all the other harsh effects on your body, makes it visible for everyone to see. It takes your choice away.
It’s really okay, it’s been a great lesson for me, especially in giving up control. But when you’re forced to make yourself so vulnerable to others, to show them what you’re dealing with, there’s a lot of pity that comes from that–and I do not want anyone’s pity over this.
All I really want is my hair.
Cancer: And So the Story Begins
I am one of those people who probably tells more than they should. If I were a celebrity the tabloids would love me. I can be brutally honest, and I don’t care much what others think of how I live my life.
Last week something happened to me, something you might consider a “life changing event.” I was diagnosed with ovarian cancer.
This is my story. It’s long, so I’ll be telling it in segments. And stay tuned. Despite the inevitable ending (the same ending you will have one day as well, my friend), I plan on being around for a long time:
5/29/13, Wednesday: THE BEGINNING
I turned over in bed and felt a sharp twinge of pain in my abdomen. It was Tuesday morning. It was as simple as that.
I got up, ate an early lunch, and felt nothing the rest of the day.
The next morning the pain was back, only worse. I could barely walk to the bathroom. I had to sit on the bed while I brushed my teeth. It felt suspiciously similar to the duodenal diverticulitis I’d had twice in the past seven years, with the last episode just a year ago, only this time it was in a different location and I felt nauseous. I knew the drill: CT scan in the emergency room and antibiotics with lots of bed rest at home.
I called my doctor’s office, and they said they would fit me in. I took a quick shower and woke up my son and his girlfriend. The pain was so intense that I knew there was no way I would be able to drive myself.
In the back of my mind, I wondered if there was any possibility of this being related to some annoyingly odd issues I had been having. For the past four months I had been telling anyone who would listen, including my doctor and dermatologist, that something was out of whack with my hormones. I had been experiencing extremely oily skin, unrelenting acne, and hair loss. In addition, the last two months it dawned on me one day that I often felt full after three bites and that I was going to the bathroom a lot more frequently than normal.
My doctor said it was almost certainly related to too much estrogen, and advised I stop taking the estrogen patch he had prescribed six months earlier for some extreme menopausal symptoms I had been experiencing (mainly hot flashes and depression). The dermatologist told me acne was essentially incurable, then rattled off a long list of possible treatments, and we decided on a benzoyl peroxide facial wash, Pan Oxyl, a thin layer of Finacea each night (which the box says is for rosacea, something the dermatologist never mentioned), and some type of pill to be taken that might kick the acne out of my system. I discovered at the drugstore that this pill was not covered by my insurance and would cost $1,000 out of pocket for 30 pills! Um, no. I was frustrated. I wanted to know why this was happening, not just what to do about it.
The benzoyl peroxide was harsh at first, but I did notice results, and the Finacea also seemed to make a difference. I continued to have breakouts, and they were the deep cystic kind of zits, but repeated dabbing with some Neutrogena Fight and Fade gel usually helped them heal quicker. Despite washing my face sometimes three times a day, every morning there would be a new crop of zits on my chin or along my hairline.
Even more distressing was the hair loss. I have always had very thick, fine-textured hair, so there was plenty of hair to spare before the hair loss would become noticeable. Also, I could wash my hair in the morning and it would be greasy by the end of the day. I felt like I was 14 again. I tried shampoo after shampoo, looking for something that would keep it from getting greasy so quickly, but without drying out the ends.
I was frustrated and felt mildly unsettled after seeing my doctor and dermatologist, as if my concerns were somehow not being taken seriously. Both doctors are excellent, but it all just played into my general unsettling sense of becoming more invisible to society the older I get. Of course acne is not life threatening, but I had just turned 53, dammit, and had already paid my dues years ago on that front! The hair loss was even more distressing, and I had visions of myself turning overnight into an old, hunched over, white haired crone with hair so thin you could see through to the scalp. I had a cane and was chasing kids and dogs off my lawn. I might even be missing a few teeth.
One day, while playing Super Sleuth on the internet to find a reason and solution for the acne, I ran across a comment by someone who said her sister had suddenly begun having horrible acne in her 40’s, went to the gynecologist for a regular check-up, and was told “after one look” that she had ovarian cysts. That one comment was enough to peak my interest enough to start reading about ovarian cysts and cancer.
I did some digging and discovered ovarian cysts can indeed cause some of the same symptoms I had been experiencing, but there was very little real info to be found. Most sites didn’t even mention acne or hair loss in conjunction with ovarian cysts. If this one comment was legit, it was the first time I had heard anyone make that connection. And if it truly was a possibility, I knew it could be a player in the new pain in my lower left abdomen.
The doctor’s office was thankfully not very crowded. The only other person waiting was a fabulous looking 78 year old woman with thyroid cancer. She shook her head slowly, smiled, and told me, “These doctors just take your money and create new symptoms to keep you coming back. It’s all about making money.” Then she talked about the coming rapture and how she’s “seen it all coming” since she was a little girl in church. I steered the discussion towards politics and Obama, and we both agreed on how disappointed we had become in him. I mean, how DOES one deflect talk of the rapture in a doctor’s office waiting room? And I loved my doctor and didn’t agree that he just wanted my money.
In the meantime, I half sat/half reclined and felt nauseous. All of the pain was centralized in one location, but it affected my entire abdomen. All I really wanted to do was find a bed.
After they called me back and weighed me, I had the sudden urge to vomit. I ran to the bathroom and made it just in time. Since I hadn’t eaten anything all day, it wasn’t bad. But I still felt nauseous.
My doctor’s initial conclusion was that it was probably diverticulitis, only this time in the colon where most people have it. When I asked about the possibility of an ovarian cyst, he admitted that could also be the cause of the pain. By this time the pain was severe.
He recommended I check myself into the ER for a CT scan. He also thought my pain was bad enough that they would want to admit me into the hospital, but I had no intention of letting that happen.
Diverticulitis is fairly common, but duodenal diverticulitis is not. The first time it appeared it caused a five day stay in the hospital. The head of surgery had no idea what the large mass on my duodenum was, only that it was a large mass and it was causing an infection. He didn’t want to operate because of its size and the possibility of bursting, but he knew that it wasn’t cancer. I stayed hooked up to an IV with all food and and liquids delivered intravenously for the entire five day stay. I had all kinds of GI tests run after the mass healed but no one could figure out exactly what “it” had been.
When it happened again last year, six years after the first time, the ER staff took another CT scan and compared it with the one from six years ago, which showed the lesion in exactly the same spot. A doctor young enough to be my daughter made an immediate diagnosis of duodenal diverticulitis, which is apparently rare enough to explain why no one figured it out the first time. I was sent home with a round of antibiotics and was up and running again within ten days.
So it was off to the emergency room again, just over a year since the last visit. My doctor is kind and caring, but I was embarrassed when he insisted on one of his nurses wheeling me out to the car in a wheelchair. I hate being fussed over and drawing attention to myself. I run marathons! I’m tough! I could do this on my own!
To be continued . . .