While a blanket, water and snacks are important for the chemo bag, don't forget to bring the good stuff like guts. No guts, no glory.
Kelly Irvin is a multi-published novelist and former newspaper reporter who worked in public relations for more than 20 years. She retired from her day job in 2016 after being diagnosed with primary lateral sclerosis, a degenerative motor neuron disease, and stage 4 ovarian cancer. She spends her days writing and loving her family.
Overhead in the Infusion Room:
Patient: I don’t know how I lost so much weight. I got a haircut, but I don’t think that was it.
Nurse: Unless your hair weighs an awful lot.
Patient #2, to friend (two precious older ladies dress in bright yellow shirts) who is embroidering a beautiful baby quilt while they talk:
She’s had three boob jobs. I’m sure he’ll pay for another one.
Nurse #2: Those jobs are expensive. You have to maintain them.
I’m an unapologetic, eavesdropping, persistent people-watcher. Most writers are. I’ve discovered recently that this pastime or bad habit or calling — however you see it — holds me in great stead during my chemotherapy treatments.
Cancer veterans often are asked by newcomers what they should bring to chemo. We reel off the usual list of snacks, bottled water, a blanket, something to read, puzzles, phone, phone charger, etc. After a year and half in the trenches, I’ve realized that the important item you bring to chemo is your patience.
It’s not just chemo for most of us. It’s also lab work. In my case, that involves going to the infusion room to get my port accessed before labs can be drawn because I’m on the “hard stick” list. Then it’s an appointment with the oncologist. Then chemo. And between each stage, there is waiting. At my last appointment, I waited two hours for my doctor and then another hour for my surgeon, with chemo in between. I went in the building at 9 a.m. and left at 4 p.m.
There will be waiting, and the only thing you control about that waiting is your attitude. I came to this cataclysmic realization only recently after a year of teeth-gnashing and whining. I even wrote a letter to Texas Oncology reminding them that while we are patients, we are also their customers, and this is the only business where they don’t recognize that waiting hours for appointments in icy cold waiting rooms is poor customer service. I was in public relations, so I know. This is especially true when your customers feel awful and some are precariously ill. But that is a topic for another blog.
So, what do you do while you wait? Here are some of my favorites:
· Read a good book. For me, it has a to be a really engaging mystery or suspense novel that keeps me from looking at my watch and groaning every ten minutes or thinking about the toxic poisons flowing into my body through a tube connected to my jugular vein.
· Play on social media on your iPad or phone. Games, solitaire, puzzles, whatever floats your boat, are good too. Text with a friend.
· Write. Bring your laptop or an old-fashioned journal. Record your thoughts. Write letters to the person you want to be.
· Sleep. The effects of chemo are cumulative. Many of us receive Benadryl as part of our pre-meds. This leads to drowsiness. We also receive steroids, which leads to insomnia. If you feel as if you can sleep, go with it. Don’t worry about who will see you. The patient with the heavy hair went to sleep with her mouth wide open. Another was snoring. No one cares. They’re happy for you.
· Pray. This has made a huge difference in my attitude and patience because it is outward facing. I pray for the other patients, for the doctors, for the staff, for my own attitude. I’ve even tried memorizing Scripture or at least repeating it so I’m constantly reminded that God is in charge and He’s way bigger than me and He’s given me a manual to use on the journey. Chemobrain doesn’t allow me to memorize anymore, but just reading: “For I am the Lord, your God, who takes hold of your hand and says, ‘Do not fear; I will help you,’” (Isaiah 41:13) reminds me to breathe.
· Take a walk (not pacing). Our new cancer center has gorgeous artwork on the walls. I stroll up and down with my walker and immerse myself in the art. I find new “subjects” to observe. Your medicine dispenser unplugs and can run on a battery. If you feel up to it and your nurse approves, take a short stroll. A change of scenery will pass the time. If you’re a fall risk like me, proceed with caution.
· Snack. Bring your lunch. My tradition is a PBJ. The ladies in the yellow shirt had tuna sandwiches. One of those times, I’m glad unrelated nerve damage resulted in me losing my sense of smell. You don’t know how long you’ll be there. Stock up.
· People-watch. I take notes for my novels. I steal conversations for my books. People are characters. Or is it vise-versa? I close my eyes and listen to the ebb and flow of conversations around me. Some are in Spanish. I practice my rusty translation skills. Nurses murmur about so-and-so leaving early. Those infernal machines beep. Nurses assure patients that their reactions are normal. That life will go on. The short hair looks cute. The bandana is cute. The scarf is pretty. The scars will fade. The nausea will subside. The doctors are nearby if you need them. Infusion room nurses are a special lot for whom a special place is reserved in heaven. Never forget to bring your kindness and patience for them.
· Some people like to engage their neighbors in conversation. Be careful with this. Not everyone wants to talk. I’m an introvert. An observer. I don’t always have the energy to carry on a conversation. A few weeks ago, a sweet, elderly lady in a scarf and a flowing skirt across the aisle needed someone with whom to chat. We had a lovely conversation about foods to bring. She really thought they should put a round table in the middle of the aisle so everyone could gather around, eat their lunches, and chat to pass the time. This was not such a bad idea for the chatty crowd like the ladies in the yellow blouses doing the verbal smackdown on the boob job lady.
This is our life right now. For some of us, it will be a regular visit for a very long time—if we are blessed. The alternative is not so great. There’s no sugarcoating this. It takes guts to stick it out. A good attitude and a sense of humor are your most important weapons. Don’t take as long as I did to figure that out.
A note on what not to bring:
Loud voices. Stay away from the speaker button on your phone. We do not want to hear both sides of your conversation at 500 decibels. See entry above about sleep.