Before I had personal experience with chemo, movies and TV led me to believe that the nausea was the most traumatic part of it. Apart from losing your hair – but, wigs! Fun! Right, Samantha!?
In reality, what Jeff experienced was a myriad of things. He refers to this cluster of uncomfortable side effects as a “hangover times ten”.
TYPES OF CHEMO
There are many different types of chemo and they all look different. The first chemo Jeff was given was Doxorubicin, which chemo patients call the red devil (thanks for giving it this super chill, non threatening nickname!) because it looks like bright red Kool Aid.
Some chemotherapy drugs are clear. Some are given through an IV, and some require a patient to have a port or a picc line put in.
THE MEDICAL STAFF WILL LOOK TERRIFYING
Nothing rattles the nerves of a first time chemo patient like seeing the nursing staff bring over a chemo bag like it’s a scene in the movie Contagion. Everything is labeled hazardous to boot. The nurses handle so much chemo a day that they simple cannot be exposed at all to it, so they wear gloves, a gown, and a mask.
Chemo hasn’t advanced in a very long time, so if you can find any comfort in this, just know that the chemo you are about to receive has likely been used to cure many people since the 1950s.
Jeff only had nausea once, on the first day of chemo, and that was because he hadn’t been prescribed a high enough dose of Zofran. Zofran got FDA approval in the 90s and it’s incredible. I also can’t hear the name without going, “ZOLTAN!”
Zofran completely gets rid of nausea for Jeff. That being said, all bodies are different. Some people respond better to a medication called Phenergan, or an anti nausea medication supplemented with something else like a sedative called Ativan. If something isn’t working for you, don’t be afraid to try things until you do. There’s no reason to be miserable. Even if you’re a masochist, it’s not worth spending the little energy you have (it’s needed for healing!) on tolerating a side effect.
WAIT FOR IT…
You don’t feel the effects of chemo immediately. I remember the first day of Jeff’s chemo. We watched the liquid move out of the bag, into the IV line, and slowly up into his port, watching as if it would hit his chest and he’d suddenly morph into a werewolf.
The most he felt was brain freeze from all the ice he was eating to deter mouth sores. It was anticlimactic. A few days later we saw the effects. It always happens around the same time white cell counts bottom out.
OTHER COUNTS WILL DROP, TOO
Expect hemoglobin and platelet count to drop along with the white blood cell count. This is normal, but low hemoglobin and platelets require transfusion if they drop below a certain amount. Every hospital/doctor has a different number requiring transfusion, but for MD Anderson it’s Hemoglobin under 8.0 and platelet count under 20.
These are THE WORST. If you’ve ever had a cut in your mouth or a canker sore, it’s like that but imagine about 70 of them in your mouth at one time. You can’t eat, so be prepared to have smoothies. And not with too much fruit because – guess what – fruit juice irritates the sores. FUN.
I call mucositis mouth pain on cocaine. The mouth sores were bad during the initial chemo but Jeff didn’t have mucus production. After myeloablative chemo (the most intense chemo) Jeff required suction at his bedside. The bucket would fill almost daily. It’s intense and does not subside until your white blood cell counts recover.
Clearing out mucus production is constantly like this:
And leaves you talking like Christian Bale as Batman for a couple of weeks after.
You hear a lot about chemo but not about the other medications that supplement the chemo. You may also have to take:
STEROIDS which cause HUNGER
Some chemos require steroids because of their T Cell repressing qualities. Steroids make you very emotional and hungry. Hangry or, as I call it, Chemotional.
When our doctor first gave my husband the steroids, I was the one he gave the warning to. “This could make your husband irrational. We’ve seen people throw things at their spouses.” His advice was basically to duck. Apart from eating an entire sleeve of cinnamon rolls at 6AM, Jeff never did anything completely irrational. He did get into an argument with someone he didn’t know on Facebook that I might have instigated circa Trump election. Jeff on steroids was mostly just like me on my period.
NEUPOGEN / NEULESTA which cause BONE PAIN
Once you’ve had chemo you’ll have an injection in your arm or stomach with a bone marrow stimulant. This will help your body quickly get new white cells in action. The quicker your white cells rise, the less likely you are to have an infection. It’s important to avoid infections at all costs. Also see: face masks below.
OPIOIDS which cause CONSTIPATION
All of the pain management drugs cause constipation, including a lot of anti nausea drugs. Chances are that if you’re having chemo you’re going to take something that causes constipation. Sure, it isn’t fun to talk to your doctor or anyone else about, but the consequences are serious. I talked to a stem cell doctor who lost three young male patients from bacteria introduced via enema. Medications used to counteract constipation (such as colace and miralax) do not have an IV form. If you have mucositis and can’t swallow, this leaves you vulnerable. Regularity is so important that you’ll go from someone who’s never peed with the door open to being like
Ports often get tangled or kinked inside the body. Something as simple as a cough can coil the line inside the chest. Having to go in and have the port fixed is nerve wrecking, but it’s a common occurrence I’ve found in patients. Having procedures done to correct the port might happen a fair amount during your treatment. Jeff had a port inserted and then about a month later doctors had to do a procedure where they went up through the groin to pull a kink down. Then, after additional issues, the port had to be removed and another one placed on the other side of his chest. Very scary when you’re dealing with low blood counts because, again, risk of infection.
(not this kind)
Infections can be deadly. No night out to dinner or the movies is worth risking organ failure. That’s why, even when Jeff’s white cell counts were normal, he’d wear a face mask out at all times. We also took extra precaution and kept our distance from people who were around lots of other people. Children were no-nos. Think about all of the other children a kid comes in contact with at school and then those germs/bacteria are brought into your home at the end of the day. What I’m saying is – bathe your kids in Purell.
Don’t risk shaking hands. Remember to disinfect your cell phone. Be nice to people…from a distance.