CHEMO WEEK 2, Treatment #3:
The first two chemo treatments were really rough. After years of running, and being a naturally outdoorsy type of person, it was so hard to lie around in bed and be sick. By Thursday of the second week, my third chemo treatment and the last one in the first three week cycle, my appetite had returned and I felt good. Just in time to get knocked back down again!
The week after the first two treatments I pretty much lived on white rice, homemade fruit smoothies, Ensure, and cheddar popcorn. I realized quickly that any calories I could tolerate were good calories, no matter how nutritious they were. Nothing sounded more disgusting than vegetables, raw or cooked. The chemo made me so sick I didn’t even want to drink water–which is bad because chemo can damage the kidneys if they are not flushed out enough.
After surgery and the first two chemo treatments, my weight was just south of 110. I was very thin, and I knew I had to eat. And drink.
The “electric” feeling I had after the first two treatments slowly dissipated from my body, and I was even able to meditate a little and do some very easy yoga. The meditation really helped me to calm down when I felt like I was going crazy. Meditation is usually one of the hardest things in the world for me to do, but it really helped.
I had also decided to cut my hair again, even shorter, because I knew its days were numbered.
I was starting to recognize certain people in the cancer center waiting room: the breast cancer woman who always came with the same friend, who rarely looked up from her iPad and looked like she might be a teacher (all teachers have “that look”); the tall, thin man wearing the track suit who moved to another seat away from us the first time I saw him–who this time said hello, talked about being bald, wished he’d cut his hair years ago, talked about how expensive it was for his wife to do her hair, discussed his wife’s friend who had a beauty shop in her house, and how we should go to beauty school and cut hair in our retirement; and another tall, thin man who smiled sadly at me and walked very, very slowly when they called him back to the infusion rooms.
I also met a possible distant relative. The receptionist told me one morning when I checked in that there were two patients with my last name in their computer. Turnage is a fairly uncommon name, and this was unexpected news. As we waited in the lobby, a nurse called out Turnage! from the wrong direction. I stood up, confused–and so did the man sitting next to me. We looked at each other, I asked “Are you a Turnage, too?” and he nodded. We agreed we had to be distantly related when he told me his family could trace their ancestry to two brothers named Turnage who emigrated from Ireland to North Carolina, which is similar to a story I’d heard years ago.
Sometimes you may discover you have more than cancer in common with the people in the cancer waiting room.
It was a very long day. I went into the chemo room at 8:15am and wasn’t done until 5:00pm. My oncologist’s nurse was waiting for me when I got to the chemo room and said that I looked great for someone who had such terrible numbers. Apparently my blood work showed that my potassium and magnesium levels were low and my heart rate and blood pressure were elevated. I knew the IP chemo had been tough, and the numbers agreed.
I was given a 6 hr potassium IV drip in addition to the Taxol IP. My sister stayed with me the entire time and we watched The First 48 Hours on A&E.
Chemo is boring. IV (intravenous) chemo is administered into the port in my chest. I sit in a recliner and let the cancer killing chemicals slowly drip into my veins. IP (intraperitoneal) chemo goes into the port directly into my abdominal cavity, on the same side where the tumor was located. For IP chemo I have to lie in a small bed and turn on my side every twenty minutes. I set the alarm on my phone in case I fall asleep (which is often). In addition to the chemo drugs, a massive amount of fluid is pumped into my abdomen. It’s not painful, but when IP chemo is finished I feel like a big juicy watermelon. And I have to go to the bathroom a lot.
Some of the drugs make me sleepy. I’m actually happy when I nod off because it makes the time go by faster. I rarely watch TV. Sometimes I turn it on just for the distraction, but mostly I just recline or lie in bed and somehow the hours tick away. I always have someone with me, usually my husband and either my daughter, Dominique, or my son’s girlfriend, Nicole, to stay with me and drive me home.
After the third chemo treatment, I thought maybe I could eat some Asian food with rice. My stomach and the chemo drugs gurgling in my belly had other plans. I will spare you the details of dinner and the effects of the IP chemo on my stomach. Maybe Thai food wasn’t such a good idea. Lessons learned . . .
If you’ve stuck with me through these tough past three posts, bless you. I promise it does get better. I don’t generally like to dwell on the hard times, but those who know me know that I don’t like to sugarcoat things. Chemotherapy is the hardest thing I’ve ever done, and in honor of all the people through the years who had no choice when they were dealt the cancer card, and were saved by chemo, I’m giving it the respect it deserves.
Chemo, I may hate you, but I salute you nevertheless!
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.
CHEMO WEEK 1, Treatment #1:
It was my very first day of chemo. The first thing I noticed when I walked into the waiting room was that no one else had the same amount of stuff as I did. I looked like I was moving into the chemo center. My huge bag was overflowing with “cancer snacks” (fruit gummies, hard candies, nuts, lemon drops, and protein bars), socks, books, Kindle, iPad, and a soft blanket inscribed with my name given to me by my friend Heather the night before at dinner.
Why did everyone else have such small bags?
And then there was my husband, with his very professional video camera with the huge fuzzy microphone on top, and the still camera with flash hanging over his shoulder. My daughter, my son, and his girlfriend were also in tow. We got a lot of stares when we walked into the waiting room.
I think people wondered if we were famous.
I looked around at the other people in the waiting room. The breast cancer women were always visible because they wore a lot of pink, especially pink caps. The men were harder to pick out. Their baldness is a common thing. Being a bald woman is a pretty strong indicator that you have cancer, but for men their only giveaway is a visible chest port. In general, though, everyone looked surprisingly healthy.
It was also an extremely well-dressed crowd. I assumed people would dress comfortably for chemo. I wore track pants, a stretchy t-shirt, a cotton hoodie, and sandals. Most of the other women were much dressier. I felt downright shabby. But then again, not everyone was there for chemo, as the waiting room accommodates patients coming in to see their doctors, just as I had a few short weeks earlier.
Before seeing Dr K for a pelvic exam, I was called back to Fast Track for blood work. They would be accessing my chest port for the very first time, and I was a little nervous about that. It had only been inserted three days prior and the area was still sore and bruised. The nurse sprayed the port with a blast of ice cold Lidocaine, put face masks on both of us to prevent any chance of germs entering the port leading to infection, and inserted the needle. I felt it, but barely, and I’ll take that any day over inserting an IV into my wrist.
Afterwards I saw Dr K for a very quick pelvic exam, and then we were sent back to the waiting room where we waited for about thirty minutes before being called back to our chemo room. By this time I was very nervous.
Finally, we were called back. The chemo rooms at my cancer center are all individual rooms. Each room has a TV, DVD, a recliner, and two chairs for visitors. I settled into the recliner for my very first chemo treatment ever.
Right off the bat there was trouble. The very nice nurse told Michael she didn’t think he could record in the hospital. He explained that he was recording me for personal purposes only. Then my daughter got called out into the hall and I heard whispering. In the meantime, the nurse explained about the drugs she was going to pump into me through the IV port and exactly how chemo worked. She told me getting an IV port was a great decision, and explained how hard chemo is on the veins. Dominique came back into the room and Michael was called out to the hallway.
Great. Michael and that damn camera of his getting us all in trouble.
Eventually, the very nice head of PR came down to tell Michael that videoing in the room was not a problem at all, but I needed to sign a release form. Also, because of HIPAA and confidentiality, he was not allowed to video any of the patients (which we already knew). If we wanted to use any of the video for commercial purposes, that would also not be a problem, but we would have to fill out some paperwork. The hospital staff laughed nervously, explaining how this was all a first for them. They laughed nervously again when Michael took out his iPhone and showed them how anyone could do exactly the same thing he was doing, only without the expensive video camera, and without being hassled about it.
This was my “easy” chemo day, the day I would receive the drug Taxol–which is the drug that will be responsible for making me lose my hair. It was considered an easy day because it would take only a few hours to administer.
Benadryl was given first to counter some of the possible allergic reactions to the drug. I have only taken Bendadryl a few times in the past, in tablet form when my allergies were bad, and each time I felt like a drugged and dopey mess. I generally avoided it at all costs. This time the dose was much higher and it would be going straight into my veins.
The effect of the Benadryl felt like a palpable wave of dopiness, like being dunked in a huge vat of vodka. Within minutes my speech was slurry and I couldn’t finish a sentence without forgetting what I wanted to say. I felt drunk. The nurse told me I might want to just take a nap, but it was impossible because I couldn’t stop moving my legs. I later found out this was “restless leg syndrome,” caused by the Benadryl. My sympathies to anyone who suffers from this affliction. It drove me crazy. All I wanted to do was get up and walk around and make it stop.
After getting some additional saline and steroids, the chemo drug, Taxol, was finally hooked up to the IV tree and administered. The nurse put on her special blue chemo outfit (to protect her from the drug, which could cause, ironically, a higher risk of future cancer for herself) and I was ready to go home an hour later.
All in all, I thought it was pretty tame. I bragged about how “it wasn’t so bad after all” and how much easier it was than I thought it would be. I had heard nothing but horror tales of the difficulties of chemo, and it didn’t seem like that big of a deal to me.
I went home and ate normally that night, and didn’t seem to feel too many effects the next morning when I went back in for my next chemo treatment. This time it would be Cisplatin, administered directly into my peritoneum (abdominal cavity) via my second port, just under my left breast.
And this, my friends, would be an entirely different experience altogether.