When I was diagnosed with breast cancer in October, 2012 at the age of 37, my world was turned upside down. My particular flavor of cancer was stage 1, grade 3, triple negative infiltrating ductal carcinoma. That's a mouthful, huh? I had my bi-lateral mastectomy performed and one month later I began six months of ACT (Adriamycin, Cytoxan, and Taxol) chemotherapy.
While I can't guarantee that your road will be without bumps, in fact, I can almost assure you that there will be bumps, I can offer you some insights that helped me along the way. So, buckle up and hold on tight, you can do this.
Good luck to you my friend. I'm sending you love and strength.
1. Don't eat anything you actually like during chemo
Chemo can cause all sorts of aversions. The most common being that you won't be able to stand anything you consume during chemo. I don't know if it's just the association with it being "chemo food" or if there is some scientific explanation. So do not, I repeat, do not bring your favorite candies or snacks with you to the infusion room. Rather, bring something you're trying to quit (lol), candy bars anyone? Just kidding. Your best bet is to bring bland, stomach-soothing items like crackers, licorice, ginger candies etc.
Some people get a funny metallic taste in their mouth throughout chemo. If this happens to you, I'd advise you to avoid using metal utensils to eat, that'll only make it worse. Other than that, you just have to grin and bear it. And remember, this too shall pass.
Still other get mouth sores. If this happens to you, talk to your oncologist about a special mouthwash that can help on that front.
2. Hire a cleaning service (and other bougey services)
Non-negotiable. Listen, you won't be buying razors, shaving cream, shampoo or conditioner for the next eight months or so. Divert those funds to a cleaning service.
While I'm at it, look into receiving complimentary integrative service like massage, acupuncture and/or working with a dietician during treatment. Insurance might cover some of the cost of these complimentary services so be sure to investigate.
3. Take center stage, you're the star of this show
Speak up to anyone and everyone. Make them listen. Now is the time to act like your oncologist is your personal therapist. Tell him or her everything that you are feeling, especially if you have a gut feeling something isn't right.
When I was receiving my third Adriamycin dosage, my vein collapsed and the drug escaped into my body. It is extremely poisonous and I knew something was wrong immediately. I spoke up, and I kept speaking until I was listened to. I had to go to the ER to get an antidote which was administered over a three-day period. The point is, nobody else is inside your skin. Only you know when something isn't right, so be your own advocate.
Also on this front, each infusion will be different for you. If you think you've figured out the key to your anti-emetics, that formula will likely change by your next infusion. So, listen to your body and if you feel nauseous, ask for stronger anti-emetics. Your doctor has them, she's just waiting for you to need them.
4. Infusion-day outfits must be planned carefully
Most people receive their chemo infusion through their power port. But if you didn't get a port, you'll receive your chemo through a regular IV in your arm or hand. Having to deal with that catheter in your arm, rolling the IV pole to the bathroom, getting your pants down, doing your business and then getting dressed again can be a real chore with one free arm. Do yourself a favor and wear elastic/stretchy pants. When you aren't fast asleep in Benadryl heaven, you will be peeing the rest of the time. In addition to the bags of chemo dripping, your doctor will also drip some anti-emetics and lots fo saline to help keep you hydrated. You'll also want to drink lots of water to keep your veins plump and to keep all the poison cruisin' through your body. That's a lot of liquid going into you. Bathroom stops will be frequent!
Oh and just an aside for those of you who are getting Adriamycin like I did, do not be alarmed when your pee is red. That's a totally normal side effect of the drug, that's the reason it's nicknamed the "red devil".
Every infusion room is different, some are really drab and pack patients in like cattle. Others are beautiful wide open spaces. Learn about yours in advance and bring things like noise canceling headphones and downloaded movies on your iPad or smartphone to make you feel at little more at home. You'll likely sleep through the entire infusion from the yummy Benadryl bag they mainline, but at least you'll have your creature comforts, just in case.
Personally, I always had gossip rags like US Weekly with me. That was about all my mind could process. I felt pretty spacey during chemo and couldn't always comprehend what I was reading. So pictures and gossip blurbs were the perfect companions on infusion day!
6. Be kind to yourself
Rest and sleep as much as you need. Today, I'm almost 3 years out and I still ask my husband on the regular "what, exactly, did I do during chemo?" I have to ask because I've basically lost that year of my life. Not sure if it's chemo brain or just my brain protecting me by blocking out that traumatic year. His answer is always the same, "you pretty much slept and were in bed for the year."
In my case, relaxation was key. For some of you, maintaining your normal work schedule will be key. Whatever your path, just be sure to listen to your body and be gentle with yourself.
In fact, have someone take you to chemo and keep you company. But that someone should be close enough to you that they won't be offended if you ignore them completely (or sleep the whole time). If you're on your own for an infusion, don't drive yourself, take an Uber. You'll be too whacked out and tired from the Benadryl and the emotion of the day to drive yourself.
7. Get your thank you cards ready
Being diagnosed with cancer is the shits. But one upside is all the presents you will receive from friends and family, near and far :) These gifts will serve as your fuel and they will taper off once you're through with active treatment. So enjoy them while they roll in and be sure to send out a handwritten thank you.
I hope this information helps you navigate your own chemo journey. Be sure to check out my first installment "7 Things to Know Before Starting Chemotherapy".