VAIDS

Thursday, January 19, 2017

Women On The Brutal Reality Of Undergoing Chemotherapy In Their 20s And 30s

“I was terrified of people finding my hair on them.” 

Everything about cancer sucks, but perhaps the only thing that comes close to the awfulness of the disease is the treatment for it. Chemotherapy is life-saving medicine, no doubt, but it can take a severe toll on your life in the meantime. Here, seven young cancer survivors open up about the surprising, devastating, and sometimes even hilarious aspects of nearly killing your body in order to save it. 

  •  “It was utterly terrifying to go in and start my first treatment because everything was unknown at that point,” says Jessica Rowley, 35, of Nibley, Utah. “Will it hurt? What will the side effects be? Will it even work? Who knows! It’s a leap of faith.”

 You thought the waiver you had to sign before rock climbing was bad? “Before I started chemo I was given a document of 36 pages detailing everything that could possibly go wrong, including a brain hemorrhage, heart deterioration, and the most horrifying illnesses besides cancer,” says Nancy Paleka, 30, of Detroit, Michigan.  “That made me cry an entire day. How the hell was I even supposed to make that decision?”

Chemotherapy is a broad term for a type of treatment, but there are many different drugs that can be used and they each come with their own side effects. “One of my drugs was called the ‘red devil’ because of the awful things it does to you,” Rowley says. “It's the one that causes you to lose your hair, but it’s so much worse than that. If it leaks on your skin, you end up having to have a skin graft because it basically eats you alive—and this is what they're pumping directly into my heart [through a port] every week.”

  • While some women need drugs that feel like liquid fire in their veins, like Rowley, others are put on a gentler regimen. “For me, it doesn't hurt past the IV placement,” says Camille Austerfield, 26, of Minneapolis, Minnesota. “It doesn't burn through my veins or make me instantly sick, it's like having a bag of saline and getting the flu three days later.”

  • “One of the things that surprised me about getting chemo was how cold it made me and how much I had to pee,” says Tracy Olsten, 40, of St. Augustine, Florida. “I learned on infusion day to take a warm blanket and some slippers. Not only does it help you feel warmer but it’s nice to have something that is yours in the sterile room.”

  • “Even though I had breast cancer, I still had to live my life,” says Rose Judkins, 39, of Apple Valley, Minnesota. “I had chemo every two weeks. I would have it on Wednesday, stay home Thursday and Friday, and then go right back to work on Monday.” 

  • “Cancer in general is a rollercoaster of emotions and chemo is especially that way,” says Jess Hodgson, 29, of Minneapolis, Minnesota. “One day you’ll feel great and the next so exhausted you can’t get up. Just when you started to have more energy, another treatment brings you down again and usually worse. I felt physically and mentally exhausted the majority of the time.”

  • “The first sign I was losing my hair was my scalp hurting, kind of like when you wear your hair up in a ponytail too long,” says Brittany Long, 32, of Highland, Utah. “The pain gave me headaches. I thought it was because my hair was too heavy so my friends cut it into a pixie, which helped for a couple of days. Finally, at the two-week mark, my hair really started coming out. At first it was just a few strands here and there and hairs left behind anywhere I put my head. Then every time I ran my fingers through my hair bigger clumps of hair came out. Some people stick it out, but when it came to this point that's when I allowed my husband to shave my head. It was very emotional for me! I had just grown my hair to the length I loved, which took years, and I felt like I was losing my identity and femininity in a way.”

  • “My hair falling out the first time was devastating. I had long, sexy hair that I took forever to grow and then that same hair suddenly felt like spider webs entrapping me in the shower,” Paleka says. “I wasn’t afraid to be bald, it was that loss of control over my body that was the hardest part.  I cut it off to regain some control.”

  • “My foods cravings were so much more intense with chemo than they ever were with pregnancy,” says Rowley, a mom of five. For her it was mainly minty foods. Judkins says she craved hamburgers after a treatment, a craving she could indulge thanks to her anti-nausea meds.

  • “After a round of the most severe chemo you can get (it completely wiped out my bone marrow), I realized that I had lost all taste for food, and if I could taste anything it had a metallic taste,” Long says. “It took weeks before I enjoyed eating anything again.”
Plus, eating or drinking your favorite foods during chemo can be dangerous, as your brain learns to associate those flavors with feeling sick, Austerfield says. “I turned myself of off bacon (yes, bacon!), dried mango, and anything orange-flavored that way.” 
 
  • “You lose all your hair, including your eyelashes, eyebrows and everything down south,” Hodgson says. “But it was nice not having to shave my legs! After my stem cell transplant, I would tell people I had a $100,000 Brazilian bikini wax.” Paleka adds that the chemo also caused her fingernails to fall out.
 
One of the side effects of many chemotherapy drugs is constipation — a problem that can be particularly hard for women to talk about, Paleka says. Because of this she ended up in the E.R. for eight hours, writhing in pain from impacted bowels. After that, to make sure things kept running smoothly, she had a daily espresso.
 
  • “Thanks to ‘chemo brain’ my memories of a lot of that time are very foggy,” Rowley says. “During treatment I could not remember anything, and I normally have a pretty good memory. I would forget to pick up my daughter from dance class; I would forget a conversation I’d had 20 minutes ago; I couldn't keep dates and names straight.”
Being bald drew angry looks and stares, mainly from other women, Paleka says, adding that she got comments like "I wouldn't go out in public looking like that..." or "Don't  you have a wig?" It was assumed that even if she didn’t have hair she’d still want to adhere to that traditional standard of beauty of long, flowing locks. This brought out Paleka’s inner rebel. “I felt even more compelled to not wear a hat or hide the baldness due to those negative comments as I felt I had absolutely nothing to be ashamed of. In fact, being bald can be really freeing and beautiful,” she adds.
 
All the women shared fears of dying, poor health, and pain, but they said chemo triggered some odder anxieties, too. “I didn't lose my hair until I was almost done with treatment but I was terrified of people finding my hair on them or leaving a trail of hair, it made me super self-conscious of what my hair was doing at all times,” Rowley explains.
 
  • “Chemo made me feel less feminine and otherworldly, and not in a good way,” Austerfield says. “Not only do you lose all your hair but you also get really pale and your emotions are all over the place. Plus, if you have to get a port [a tube placed directly in the chest for the length of treatment to administer the drugs] that can make you extra self-conscious. I felt like an alien in my own body.” 
 
Even though sitting up, much less walking, may feel like the last thing a chemo patient wants to do, it’s important to get the blood moving. “Walking right after treatment helped tremendously. Even if it was just around the block it made me feel so much better,” Rowley says. “I had to force myself to get out and walk, exercise, and move, but it made my recovery go faster and made me less likely to feel sick,” Hodgson adds. (Squeeze in a relaxing workout with Rodale’s With Yoga DVD!) 
 
  • “The chemo left me with neuropathy, making my toes and fingers numb and painful especially when exposed to heat or water,” Paleka explains. “It sucks not being able to take a warm bath, but hey, I never have to do dishes or other similar chores again.” 
 
  • “The treatment fried my eggs and now I have hormones of a 60-year-old,” says Hodgson, who had 25 chemo treatments followed by a stem-cell transplant. “I’m a woman under 40 who’s in full menopause—that takes a toll on your health, your family, and your relationship with your spouse. Thankfully there are physicians that specialize in this. I highly recommend any female going through cancer treatments to see a specialist in women’s health.” 
 
  • “I was surprised by how long it takes to get over cancer; it doesn’t end when the chemo does” Long says. “Things that helped me were having visitors! It helped speed up the days and took my mind off of me for a little bit. I also had a Facebook page where I posted updates, good and bad. Sharing my thoughts and feelings really helped me get through it all.”

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