My friend Ashley is kicking breast cancer and blogging about it. I recently did an interview with her about what it’s like to be a young adult with cancer. Click the link above to head on over to her blog and check it out!
My must haves:
1. Burt’s Bees Fragrance Free Lotion – I am SUPER sensitive to smells during treatment so fragrance free is a MUST! I always bring lotion with me to chemo because if I’m really uncomfortable my Mum or fiance can give me a mini hand of foot massage.
2. Chapstick – need I say more?
3. A journal and pencil to take notes- in case the doctor comes in or the nurse tells you something that you’ll want to remember. I never write the notes myself. A friend or family member takes them for me so that I can concentrate on listening. I also keep a running list of questions for the doctor in my notebook. I also try to talk to my doctors before taking anything like Ativan because I have a hard time remembering what’s happened once I take it!
4. Laptop and <not pictured> charger- When you feel okay, it’s nice to
stalk browse Facebook. Beware though, if you start to get nauseous, it’s time to close down the computer. The screen and how your eyes move on it can increase you tummy troubles.
4. Nook- I have a classic e-reader with ink display that is very easy on weary eyes. I can always read it- even when I’m nauseous- because of the way the screen is made. I love reading lighthearted stories like the Flavia de Luce series by Alan Bradley. The first book is my favorite: The Sweetness at the Bottom of the Pie . I’m in love with my Lilly Pulitzer Nook Cover.
5. Headphones- I’ve been lucky enough to always receive chemo in a private room… but many chemo clinics have an open room with dividers in between patients. Headphones HELP, especially if a neighbor is having a rough time with their treatment (Read: barf noises are drowned out well by loud Mumford and Sons)
6. Some sort of hard candy or mint – I have ALWAYS tasted my chemo, heparin flushes, and saline rinses. My doctors say it’s got something to do with being young. Pro tip: I find it helps to keep my tongue in the middle of my mouth, not touching anything, when I get a medicine taste from an injection. It sounds weird but it totally tricks your taste buds into not tasting!
7. Lidocaine- I used this cream about an hour before chemo to numb the skin by my port. When it came time to access my port I couldn’t even feel the needle!
8. Something lighthearted to watch.
9. A button up sweatshirt can be easily put on and removed around an accessed port. To chemo I usually wore a cami, shirt with a wide open neck, and a button down or zip up sweatshirt. if you don’t have a port in your chest, make sure the sleeves on your shirt aren’t too tight to role way up.
10. A warm beenie. I always got hot/cold flashes during chemo. Also: a beenie is more comfortable to sleep with than a scarf that has a knot in the back.
Not pictured :
Pillow, blanket, hand sanitizer. All of these are probably available at your doctor’s office but if you’re as much as a germaphobe as I am… or if your counts are low… you can bring your own 🙂
FOOD. My infusion clinic is stocked with mild food like crackers and orders me a meal if I’m going to be there during a meal time. If you are nauseous, keeping a little bit of food like Ritz and PB in your belly can REALLY help. It’s also important to keep drinking non caffeinated drinks. ( My fave was seltzer water with cranberry juice in it, because it DIDNT taste like metal to me!) Ask to be hooked up to plenty of fluids if you’re having trouble drinking enough.
Life over the past year has been in Limbo for us. Limbo: suspended, on hold, on the back burner, up in the air. And I use ‘us’ because I’m certainly not the only one who is sitting pretty. Cancer is a family business and my fiance, Mum, sister, and everyone else that I love have been waiting around for SO LONG. I started stem cell treatments this past summer and my last scan predates those… so it’s been a while. People ask me how I’m doing all the time and I have no idea what to tell them. It’s a sweet and caring gesture, to ask how a cancer patient is ‘doing’, but it’s also so darn ambigious. Do they mean to ask if I’m in remission? Don’t they know that if I were I’d be shouting it from the rooftops? Or are they asking about how I feel? Should I be honest?
The anxiety wrapped around that question is not unique to me or to cancer patients. How often have you been asked, “How are you?” and been tempted to answer with a bitter or sad truth? On the flip side, we must decide ourselves when asking after others if we’re ready to deal with, or help out concerning, an honest answer.
Here’s my truth:
I’m okay. I am blessed. I have the wonderful opportunity to plan a wedding while waiting on a scan. For those of you that don’t know, wedding planning is an all consuming act and a fabulous distraction. What I’m averting is the ugly fact that I have been in a waiting period for the past 9 months concerning something pretty heavy duty… I still don’t know if the painstaking, intrusive, and tiresome process of a stem cell transplant has saved my life yet. I do know that I’m angry at the statistics. This was supposed to be cured with 6 months of chemo and I was supposed to be back on track to livin’ by now. I’m fatigued. Very fatigued. And I’ve got side effects up the waz from all of the treatments I’ve had. But you know what? I woke up and there was sparkly white snow surrounding me. I only had 5 customers at work today(that’s one an hour, folks). Two of my favorite songs came on the radio on my way home. And when I walked in the door, there was a hot meal waiting on the oven, candles burning, and a kiss on my lips from the man I love. So, ya, I’m okay… but can we talk about you now? What’s your truth?
So you just moved out of your parents house. You got a cute little apartment and the rent is too high but whatever its yours ( and your 5 roommates) and that’s all that matters! You’re working at a steady job that doesn’t relate in any way, shape, or form to what you went to school for but whatever- its money.
You’re so stinking tired, but it must be from that cold you can’t shake and all the extra hours you’ve been picking up.
One day, while working, you notice how sore you are. You rub your shoulders and feel a lump. What the hell is that? It moves. That’s weird. “Hey Susan! Look at this, it moves!”
A few weeks go by and that little bump won’t budge. You go to the Doctor, they tell you to try not to touch it and to take some Advil.
A month passes and you feel like you need to take action. That sucker is still there. What is it that they say about being your own advocate? “Ya, I should do that!”, you think. In the back of your mind you’re also thinking… “and I should totally do it before I’m 26 and my parent’s health insurance coverage runs up.”
You get sent to a specialist who casually feels you all up and down and you pretend not to be embarrassed. He asks if he can do a biopsy today. Jeesh what’s the rush, buddy? Wait a minute… aren’t biopsies for…
2 weeks later you get the results call from your doctor. You were so nervous at work that you got sent home and thank god you did because this phone call would not have been pretty in front of others.
The doctor asks you if you’re alone or if you’d like to call someone to come over before you talk with him. You beg him to just say it because it’s killing you. Hodgkins Lymphoma he says. He spells it for you. Don’t google it, he says. He talks of an oncologist appointment he’s made for you the next day. You can’t breathe. Suddenly the Earth has lost all oxygen. Your whole body seems to be doing the Harlem Shake without your consent. You call your Mom at work and ask her to come home. Same with your sister, and your boyfriend. Somehow you made it from sitting up to laying down in fetal position. Tears don’t come until you have to look into the eyes of the ones you love and tell them. ” I have cancer.”
This is an abridged and modified version of the beginning of my journey with cancer. While writing it, my stomach began to turn, just as it did on that fateful day in June of 2011. If you’d like to share how your journey started please do in the comments section. Hearing others’ stories and seeing the similarities makes you feel much less alone.