What to Expect the First Day of Chemo
What to wear? On the one hand - who cares? What a lousy day. You get up in the morning and you think, Oh my God. Im actually going to have chemotherapy today. Im all for cheerleading and Im a Lets go fight! kind of person, but every time I woke up from a fitful sleep on a chemo morning, my first thought was, I cant believe I have to do this. There was often an expletive to go with that. Mostly in my head. But the truth is, its not that bad. Really. The actual experience of sitting in the chair is pretty much a non-event most of the time; its the idea of it and the side effects you know are coming, or that you worry are coming, that make it difficult on Day One.
You do have to get dressed, though. You actually have to put on clothes and go to the clinic and have it all done to you. Theres no way around it. Its the best treatment we have, and so we do it. We hate it, but we do it and you will be able to handle it. The best thing to wear? Shirts that button or zip so theres easy access to your port, if you have one. If you dont, then anything which allows you to comfortably roll up the sleeve.
Make sure you start off right. Before you leave home, eat a real breakfast; you may not want to eat for the rest of the day. Even though youre already feeling sick to your stomach from nerves and anticipation, try to eat and drink something. Youll be given fluid through your IV, but you still dont want to be dehydrated, because that can make it difficult to access your port or start an IV.
Ok, so this is what really happens:
First, you need to complete lab work - have your blood drawn, to make sure youre well enough to get chemo. Then you review whats going to happen with your oncologist. Make sure you tell your doctor everything thats been going on since you saw him/her last. EVERYTHING. Make a list before you get to the hospital, so that you dont forget anything (my husband and I used to put together my list on the drive over). Some of your issues may turn out to be side effects of sleeping pills or anti-anxiety meds, or something else. Dont be embarrassed, think its insignificant, or assume its not related. Sometimes you may just get a sympathetic nod, but you still need to mention all changes, whether physical or behavioral. Drugs of all kinds have side effects. Believe me. They can do strange things to you.
So now youre ready. Well, thats an exaggeration; youre never going to be ready for chemo. But lets assume your counts are fine and now you go into that next waiting area. Heart pounding, wearing your comfortable clothing, and tubing sticking out of you. They call your name and you go back to the area. Chemo floors look about the same all over. In large hospitals, there may be a few private rooms. In small clinics there may be rooms with two treatment chairs. In lots of settings, there are reclining chairs lined up facing windows or each other, IV machines next to each chair, and chairs for visitors. I always asked for a private room. If the wait was going to be too long, I took whatever I could get, but I liked the privacy, because I always brought someone with me.
You sit down and the nurse checks your name and birthday and sometimes asks for your weight - my least favorite part. Youd be surprised how many times you are weighed during this whole experience. EVERY time you see a doctor. Which is a lot. I may only have one boob, but Im still a woman and I hate being weighed!
If youve already been accessed for the lab work, youve got clear tubing sticking out of you - if not, you have to be accessed again via your port (if you have one) or vein. When you sit down, the nurse will ask if youd like a blanket. Im a big fan of blankets. Especially when they come pre-heated. Kind of like the hot towel in a restaurant - soooo nice.
Then youre done with prelims. All the nurses do is hang the see-through plastic sacks on the IV machine, plug the machine into your tubing, open the flow, and voila, it has begun. You may feel a little something in the catheter, but you cant feel the actual medicines. The first drugs they hook up are the pre-meds - anti-nausea drugs, steroids, and usually an anti-anxiety med like Ativan that makes the anti-nausea drug more effective. And they add a bag of saline solution as well. When the sacks of medicine are depleted, the machine beeps, and a nurse shows up to switch bags. When they start the actual chemo drugs, a second nurse comes in and checks that you are getting the correct meds. At this point, you may feel sleepy from the premeds - or not. I never did.
You can unplug the machine and drag it to the bathroom so youre not confined for the whole time. The IV machines have battery back-up, so they still work. If you feel anything peculiar at any time, tell someone! The way my ports catheter was positioned meant that I could feel the infusion starting through my veins. Im just really sensitive and the first time it freaked me out.
Oh boy, did it ever freak me out. If you start out, as I did, on Adriamycin and Cytoxan (fondly known as A/C), the first thing you learn about Adriamycin is how toxic it is. Its basically a type of poison, designed to kill cancer, but it can kill lots of other things too. And just to make sure you cant miss it, its a vivid orange/red. Theres a whole pamphlet about it, telling you how the nurse will administer this one by hand, and if you feel anything unusual, let her know because its really toxic to tissue. So, Im sitting there with my husband and mother who are, of course, desperately trying to remain calm and cheerful while I start this grueling process, and Im being hyper-vigilant. I thought thats what I was supposed to be. The nurse is pushing in this bright red fluid and Im thinking about it and I feel something really weird. I tell the nurse, and she asks me what weird means, can I describe it? Does it sting or burn, etc.? I start getting really anxious because I cant describe it. I mean, I never had anything like this before and the sensation is in my neck, right where the catheter from my port is, and Im just about hyperventilating thinking that this toxic solution is leaking into my neck.
Of course, I was totally fine, but my catheter turned out to be angled in such a way that I could actually feel things sliding through it; and that first time, I was already anxious from having to start chemo and then trying to be my own advocate to the point of near-hysteria. (My husband may suggest leaving out the word, near.) Oh who cares - starting chemo you have the right to freak out. Although it really doesnt help matters much and Im here to tell you that its really not that bad. Really. Have I said really enough to make you believe me yet?
Seriously, though, dont forget that you are already doing about a million things that are awful. You dont need to put up with any more than you have to. And you dont need to be afraid to speak up. Be nice, but always speak up.
They tell you to meditate on the medicine thats going into your body and attacking the cancer cells. All I could think of was Pac-man. So I pictured this bright orange-red stuff like a flaming Pac-man, burning and eating the cancer cells. Theres nothing to feel, its just ugly to look at and very, very real. After the poison, they give you a little more saline, and maybe then a shot of Neulasta to boost your blood marrow production. Not everyone needs this, so don't worry if you don't get one. This is another lovely treat. A shot right in the belly. Trick of the trade: the slower they push the plunger on the injection, the less it hurts. I learned this the hard way.
WHAT TO BRING
Friends and/or family. Well, thats assuming you have friends or family who can be comforting and distracting (in a good way). You dont need anyone in the room adding to your stress. They cant put that on a prescription pad - but they should. You need people who are capable of being supportive and protective. I give bonus points for funny. Also, these rooms are small and not always private, so keep that in mind, too. My husband always came with me for the lab-work and the meeting with the oncologist. Hed stay until I was hooked up and then my mom or one of my friends would take over and keep me entertained during treatments. I was lucky to have people willing to come with me every week, and it made the time pass. There are TVs in the rooms and you can bring a book or iPod or DVD player, but I always found that time moved faster when I had company. Its really not scary for someone to watch, so if you have friends who are willing to accompany you, take them up on their offers. If you can, have people come more than once. The second time is more familiar, more comfortable for them. Also, once theyve learned the routine, they might notice if something seems unusual.
Do not let anyone come who might be overly emotional or a burden. This is not the place for that. Your chemo buddys job is to make you feel better and pass the time. Its not your job to reassure anyone that youre ok.
I always brought a cozy blanket with me. All hospitals have warm blankets, but I also liked having my own. Some hospitals have a room with snacks and drinks, and I suggest you check it out during your first visit. If you dont like what they offer, bring your own because the hospitals selection will never change. I couldnt eat during chemo, but some people can, so it pays to have things you like around in case youre hungry.
Take note of the nurses you like and those you dont, and when you check in, ask for the ones you like and never take one you dont. Just quietly mention that youd be more comfortable with someone else. You dont have to explain yourself. You will not be the only one doing this. I promise. Youre going through hell; take comfort where you can!
TOP 5 Hints for during chemo
1. Drink ice water and suck on ice chips or popsicles (you can bring them in a cooler) during chemo - it helps prevent mouth sores.
2. If you have to go back in for a Neulasta shot, or give one to yourself (like I did) take a Claritin or Zyrtec with the shot. Apparently it helps counteract bone pain which can follow.
3. Bring only the people with whom you feel totally comfortable. This is one of the most vulnerable periods of your life and you need to feel supported. You should feel free to be pathetic and whiny, strong and funny, sleepy, famished, frightened, etc. This is not the time to put on a show. Or a wig, or a boob, for that matter. Be as comfortable as you can.
4. Plan for extra time. Remember, this is health care; things often take longer than you think. Especially the first time. Ask your doctor how long it should take and then add at least an hour, just to be certain. You dont want the person whos supposed to be driving you home looking at her watch and asking you how much longer it will be. Yes, this very thing actually happened to someone I know. As if the patient should keep a tighter schedule!
5. Have your doctor give you a prescription for Emla numbing cream and put it on your port site at least an hour before you see the doctor. This stuff is awesome! It numbs the site completely. Pass up the numbing shot they offer you. It hurts more than the needle prick for the access. It sounds good - I mean, who doesn't want a numbing shot - but, OUCH! One prick is always better than two.
But what does it FEEL like?
What does it feel like to be sitting in that chair? In the beginning, its dreadful. Not that youre being tortured, because youre not - youre being saved actually - but the whole thing and the idea of whats happening to you is just plain awful. Its stressful to worry about all the medications and side effects, and if youve recently had a mastectomy, youre still dealing with a lot of pain.
Believe it or not, it does become more or less routine. After a while, you know the staff, they know your needs and its not quite as bad. But I did find that every Tuesday morning I had trouble getting dressed. I just hated getting dressed for chemo. Somehow, I felt as if I shouldnt have to be dressed at all. I wished I could just go in my pajamas, but it wasnt my style. Go in your pjs if it makes you feel better. I didnt actually see anyone in giant footy pajamas, but it would have made me smile if I had.
Youve heard the stories of the women who go to chemo in their Prada and Chanel. I saw Sex and the City. I have to tell you - dont feel pressured by those women! Do what you feel most comfortable doing. Chemo isnt a time to feel social pressure to be fabulous and fun. Be fair to yourself instead. If youre a Samantha, embrace it; but if youre an Andrea (thats me) then couture and chemo dont mix.
Finally, its over - after hours and hours - and they pull the tubing out of your arm or port, and send you home with a Band-Aid covering the spot. I always found it somewhat ironic that the whole thing ends with a Band-Aid. I think they should at least have superhero or Dora the Explorer ones. Kind of reminds me when my kids were little and they wanted a Band-Aid on everything. Like they were magic. Heres hoping.
It doesnt hurt when they take the needle out, just a click and a tug. You will be exhausted mentally and physically; its draining. But on the day of chemo, you will probably just feel tired from the stress and from some of the anti-nausea and anti-anxiety drugs. The side effects dont kick in for a day or two or three. Everyones different and youll learn your own pattern but for most people, its around the third day after chemo. So if youre working, try to schedule your infusions for a Tuesday or Wednesday so you can be home on the weekend. Make a note the first week when your worst symptoms kick in so you can organize your schedule.
And that's it - DAY ONE in a nutshell.