I was told my first chemo treatment would take about 3-4 hours total and since I was scheduled at 10:30am, I was told I could bring in a lunch if I wanted to.
"Don't people get nauseated during chemo? Wouldn't the smells bother other patients?" I asked, kind of surprised at the thought of people bringing in their own lunches. "Oh, we give everyone anti-nausea drugs before the chemo drugs, so almost nobody gets sick while they are here." I took it as comforting and thought to myself,"Wow, they really have this chemo/nausea thing down to a science." I had already convinced my self that chemo was not going to make me sick. After all, it didn't make my brother sick during his battle with Acute Myeloid Leukemia, and we were so alike in our DNA that I am confirmed as his marrow match should he ever need a transplant. (Foreshadow: first set of alarm bells going off in the background.)
The Chemo Lounge, as I have christened it (in my mind it has a sweeping script of skeleton red neon covering one brick wall), consists of a large room with seven recliners for patients and one small nurses station in the corner. Four of the recliners are extra-large, brown faux-leather Lazy-Boy rocker/recliners, looking for all the world like chocolate marshmallow seating. These are the deluxe units that recline to an almost horizontal position with foot rests that extend an extra 4 inches for extra-tall patients. The other three recliners are blue utilitarian units that do not rock and barely recline at all. They are minimally padded and the arm rests are barely wider than my forearms. They look like Amtrak or Greyhound seats.
I received the anti-nausea meds first. No one had a smelly lunch with them at that point. I wasn't feeling any nausea before the drugs were administered. The two chemo drugs I received are called Adriamycin and Cytoxan, a fairly common duo and in fact, the same pair that Joan Lunden received during her chemo treatments. My nurses did not tell me that; I learned that when I watched some of Joan's videos on YouTube.
Cytoxan is clear. Adriamycin is a dark, reddish color with a slightly orange tinge to it. It is nicknamed Red Death. I understood why later that same day. (Fair warning number two. You will receive no other warning.)
The warnings and side effects of Red Death are pretty much the things you would read on a sheet of warnings about any standard exposure to radioactive elements in this world: If you get it on your skin, wash the area with soap and water every fifteen minutes and tell your caregiver. If you feel stinging or burning in your skin at the injection site, tell your doctor immediately. Apply ice to the skin for fifteen minutes, four times each day to relieve pain or swelling. Do this for three days. If you have blisters, sores, or a wormy discharge at the injection site, tell your doctor immediately. (Just kidding about the wormy discharge.)
I do not have a port so the Adriamycin is "pushed" directly into my IV by one of the chemo nurses. Two large syringes full of Red Death arrived at the Chemo Lounge, special delivery in a bag marked with skulls and crossbones just for me. Before Nurse A unpacked it, she put on her bullet-proof vest/lead shield, heavy rubber gloves up to her elbows, and a 270 degree full-face shield. (JK about the bullet-proof vest/lead shield, but she did put on a new gown just to administer this drug.)
Before she started, she reminded me that it was known as Red Death. "If you can feel any kind of burning in the area around the injection let me know right away. Basically, this is so nasty that if you happen to have weak vein walls, it can burn right through them and collapse the vein and then it will be going straight into the tissue, and trust me, you don't want that to happen."
How dare she imply that I didn't trust her? Our young, but very intimate nurse/patient acquaintanceship is 100% based on trust. I had no reason NOT to trust her. Good grief, I was letting her shoot me up.
Plus, right after trust, I am all for blatant truth and honesty, especially when it comes to medical procedures. Despite that, I guess I would have preferred a little less scary description there. Kind of like when your dentist says, "Okay, you're going to feel a pinch now," and they stab a needle into your jaw. That's not a pinch. I don't know anyone who can pinch like that.
I didn't have any burning sensations, and, while she was slowly depressing the plunger on the syringe, she was very carefully looking at her watch. I asked why this med had to be "pushed" the way she was doing it and she replied without looking up, "Because Red Death would eat right through any type of flexible plastic that the drip bags are made from. Within five minutes it would dissolve that lightweight plastic and burn a hole in the tile and sizzle straight through to the next floor." (JK again - she just said statistics show that pushing it has the best results.)
Nurse A was not bothered with any more of my questions. I did not want to break her concentration of looking at her watch and watching the milliliters being pushed. She was just as careful and cautious with the second syringe. I think we were both relieved when she was done, the syringes were in their own radioactive waste bag with skulls and crossbones, and all of her protective garb was thrown in a special bin.
Nurse B reminded me that I needed to drink vast amounts of water over the next two or three days so I could make sure that Red Death did not collect in my kidneys. Just like the veins in the injection site, the danger internally was that it could pool in your kidneys or bladder and eat right through your organ walls. "Keep drinking water," she said. "In this case, you cannot drink too much water. It does not dilute the drug's effectiveness at all - drink, drink, drink. You will probably see some red urine and red stools over the next few days. That is normal. If you see blood in the toilet, that is not normal - call us immediately if you start passing blood."
"How will I know if it is blood or if it is from the Adriamycin?"
"Oh, you'll know. If it is blood, that means the Adriamycin has eaten through something internally and when you urinate it will feel like you're peeing fire." Now THAT is some descriptive word work. Couldn't wait to share that on my blog.
The bag of Cytoxan was administered last. While this was being done Nurse A rolled over the plastic tower of bins filled with (mostly pink) chemo hats. I saw other patients paw through the different bins and try some on. I didn't think that I would see any hats I would like, let alone hats that would fit.
As an experienced shopper of clothes in sizes that most people don't wear, I know my size is typically found on either the shelves closest to the ground, closest to the ceiling, or on the clearance racks in back. So I went straight to the bottom bin in this rolling tower filled with hats that were lovingly homemade, hand-knitted, and hand-crocheted. Surprisingly, I found a few that were big enough for my head, and they were even made in some bright colors as well as some non-pink neutrals. One was hand-crocheted with a thick, white, pearl-y yarn that I swear was fitted to a basketball. This might be my stock, sensible Iowa winter cap.
The second selection was a machine-knitted skull cap, fairly thin, and made from a tan/khaki color, but it also had ultra-thin gold threads running through it. This one will work for the Golden Globe Awards because it perfectly accents my gold, sequined gown.
My third choice was crocheted out of a lovely, jewel-colored stretchy, chenille. With a palette of navy blue, hot pink, pale pink, rich burgundy, and a silvery sky blue, it was the perfect size for my head. It fits the depth of my cranium so well it almost engulfs my head like a 1930s swim cap. I feel like can dive into a swimming pool with my synchronized swimming teammate Ethel Merman, who would be wearing a matching jewel-colored swim cap, and immediately perform intricate maneuvers and poses underwater. (Author's note: I have a fear of water deeper than I am tall, so this hat must have magical powers. Ethel Merman died in 1984 of inoperable brain cancer. RIP, Ethel.) When I tried this hat on later in front of my sister, I told her I felt like an exotic bird in it, especially because of the variegated colors, but also because it has little flaps and fringes that will flutter in even the slightest breeze. She just laughed at me.
When the IV was wrapping up, the nurses told me that the doctor had called in a couple of prescriptions for anti-nausea meds. Nurse B said, "What we gave you here in your IV to fight the nausea will last 6-8 hours. It is 2pm right now, so you should be okay until 8 or 10 o'clock tonight. If it were me, I wouldn't take a pill tonight, I would wait until morning."
"I wouldn't," said Nurse A. "I would take a pill tonight just in case I needed it before it was the middle of the night." I told them I would be taking a pill. My history of nausea with all kinds of narcotic pain relievers is long and colorful - they always makes me sick to my stomach. Even if I get anti-nausea meds in my IV and have a patch behind my ear during surgery, I still get sick. After my last knee surgery I stopped taking the pain pills just a day or two after surgery. I learned I can manage the pain if I can feel it, but I can't manage the nausea and vomiting.
Nurse A explained that the two different meds (Compazine and Zofran) could be used simultaneously once every 8 hours, but staggered, so each med could overlap the other. "We never really know which anti-nausea meds will work best for which patient, so this is kind of a trial and error until you figure out which one will work the best for you." (Cue second set of alarm bells going off in the background.) I was just hoping that I would have time to pick-up my prescriptions and buy a few groceries before I got home.
I felt fine during the whole process. Again, this is what my brother kept saying about his chemo treatments. He felt fine. Other patients were done with their treatments earlier than me, so they were allowed to get up and go. New patients came in and filled the empty chairs. One woman did bring a Burger King lunch in with her. As I saw her come through the doorway with it I wondered if the smell would make anyone sick or not. It didn't. I would have been upset if it had made me feel ill, because when I am craving a fast-food fix, it is the BK grilled cheeseburgers that I desire.
They gave me a sheet with a long list of clarifying symptoms and side effects that would require immediate medical attention. Aside from a reaction that clearly included symptoms of radioactivity poisoning, the biggest concern was getting dehydrated from vomiting. They offered me some Christmas cookies with bright green and blue frosting that a patient had brought in (my first chemo was the day after Christmas). I thought that was a little odd, since chemo patients need to be concerned always about being exposed to germs. Schools won't even allow you to send homemade treats to school with your kids - they have to be individually wrapped, store-bought crap. I passed on the cookies.
As I was driving away, I was feeling pretty good about the whole process. Not even the tiniest hint of nausea was in my consciousness. I was absolutely convinced that I was going to fall into the small percentage of people who did not get nauseated or sick to their stomach. My brother did say he felt a little bit nauseated once or twice, but that he never got sick to his stomach. Maybe our family just has the tough gene when it comes to chemo.
As it turned out, I did fall into a fairly small percentage group. But it was the group of patients who became violently ill from the chemo drugs and end up in the hospital for dehydration.
I did stop and get the prescriptions along with a few other groceries that we needed. Came home, unloaded my truck, had a normal afternoon, fixed an early dinner for everyone (I was really hungry since I didn't eat lunch), and ate dinner like I usually do.
I do remember thinking that maybe I shouldn't eat a full-sized meal, just in case I got sick later, but I remember what the oncologist said, "If it smells good and tastes good, you better eat while you have the chance. The very next day that same food and drink may not smell or taste good at all." So I ate. A lot. Hey, it was Christmas leftovers with Christmas goodies for dessert.
(OK - I lied about not giving you more than two warnings. This is your third and last chance for the Chicken Exit if you don't want to know these details!)
About 6:30pm I started feeling a little queasy, so I took a Compazine and washed it down with water - which now tasted funny. By 7pm I was laying down in my bed and by 7:30 I was vomiting. For two solid hours, I was vomiting. Not just feeling a little nauseated and vomiting, I was retching. Frequently. I knew I couldn't take the other pill until 10:30 to keep them on a staggered scheduled, but more importantly, I knew if I took a pill of any kind it was going to come right back up, so I didn't.
I was desperately trying to get some water inside of me. Every time I rinsed my mouth out I followed it with a small sip. Once the vomiting was simultaneous with the diarrhea, I knew I would be in trouble fast.
My husband has EMT training, and he's an Army Ranger, so he has a fair amount of medical background for a guy who really carves leather for a living. He was right by me for all of it, changing the buckets, cleaning up the messes, handing me a water bottle and cool washrag. My boys were watching some of the new DVDs they got for Christmas from their sister. I am sure they probably turned the volume up to drown out he noises emanating from the bathroom, even though they were at the other end of our apartment.
Two hours on the toilet holding a bucket in my lap. Every time my body heaved and every muscle in my torso was flexed I was puking, peeing, and pooping (and yes, all three were actually a reddish orange from Red Death, but no blood). My eyes were watering and my nose was dripping. With the exception of my ears, I successfully had fluids being ejected out of every body orifice I had.
I think it was about 9 or 9:30 when I told my husband we were going to have to go to the ER, if for no other reason to get an IV to get some fluids back in me so I could have more ammunition to keep puking my guts out overnight. We told the boys not to worry, that we would be back later.
I brought my cancer folder with me that had the sheets for the chemo meds as well as the prescriptions that I had for the nausea. Once I was on a gurney in the cold ER room under fluorescent lights, I think I really let loose. I didn't have to worry about my boys hearing me, and I was in a hospital, so I was moaning and groaning and my chills and shaking was rattling the hospital bed on wheels. Good thing the wheels were locked or in my deluded state I would have shimmied and synchronized swam right on down the hallway looking for Ethel.
They stuck a needle in my left hand to get ready for the IV if needed, but initially just gave me 10mg of Zofran, which was the second med I had a prescription for but had not yet taken. That did nothing to even slow it down. I don't know how much time passed before they gave me a 50 mg Zofran shot in my butt. After I had this shot, I started to get some relief. At least enough that it was slowing down the retching to only once every 15 minutes. And once I had enough blankets on me and was warm enough to stop the whole-body-shuddering, I could actually rest between episodes. Kind of like contractions during childbirth. They did go ahead and give me an IV bag of saline, just to pump up my fluid levels.
The nurse that was on duty kept saying to my husband, "We're not going to be able to completely stop the vomiting. No matter what, there is nothing we can do to completely stop it. It's a side effect of chemo. It's expected. They did tell you that, right?" Aside from the condescension in her tone, I appreciated her saying that. We knew that coming in, but we were both smart enough to know that dehydration was right around the corner.
The ER doctor wrote me another prescription for Zofran, but a sublingual one, so it dissolves under the tongue and you don't have to try and keep a pill down. They told us the shot should last us until morning, at which time we could fill the scrip. We tried to time our exit from the ER between puke runs, so I was put in a wheelchair and pushed to our truck. I got in the front seat, and as soon as Will started driving I was puking in a bucket again. It maintained a consistent window of about every 15 minutes for a little while. Once we were home, I have no idea what the timing was between the puke runs, but I do know that I was getting a little bit of sleep between them. We got back home a little past midnight, so I am going to guess that I still puked every hour that first night.
The next day was Saturday. My husband filled the new Zofran scrip, but it smelled awful so I couldn't even imagine putting it in my mouth. I tried one anyway, but my mouth was really too dry and sticky (indicating dehydration again) for it to dissolve, so I chewed it up and tried to swallow with a sip from a water bottle - which promptly just started another round of retching. Meds tasted bad. Water tasted worse. I really did not want to go back to the ER so I buckled down and with my husband's help, we forced more water down. I tried to take 2 or 3 sips every time, and my husband would make me take "just one more". It almost always made me vomit again, but I could tell I was keeping enough water down that my mouth was not sticky anymore. He tells me there were a few times that I was so out of it that I didn't even respond when he was trying to get me to drink. I remember at least two times that I agreed to take a sip, but fooled him because the room was dark and I just let it slide right back into the bottle.
For the rest of Saturday I was able to start rotating the Compazine and Zofran pills, and tried to time them so they would be ingested right after I puked, giving them some effective time. At one point I wanted to try some crackers and my husband reminded me that the ER doc had said "nothing but clear fluids for a day". I ignored him and tried some crackers and started puking. Saturday overnight it had subsided to puking once every two or three hours.
Sunday I was feeling much better. Well enough that I wanted to try some crackers again, this time in the hopes they would make me thirsty enough to want to drink more water. Water still was about the worst tasting thing I had ever put in my mouth, so my husband went and bought some apple juice, white grape juice, and Sprite - you know, clear fluids. Every one of those tasted so sweet it was actually worse than the water.
The crackers stayed down Sunday, although I still needed to drink much more water. Now I was a tiny bit concerned because I did see a little blood in my urine. I did not feel like I was "peeing fire", but I called the doctor anyway. I was terrified that with so little fluids coming in that the Red Death had settled in my kidneys and was burning a hole right through it. It turned out it was my period. I have had about three periods in the last two years, and I have to start on the weekend of my first chemo treatment?! Even better, I was out of the necessary feminine hygiene products! Lucky for me, one of my friends called to let me know that she was driving to see me and was only about 15 minutes away. I texted her and asked her to pick up some tampons and pads. Bless her heart, she also brought a carload of groceries including three kinds of deli chicken, a ready-to-bake pizza, ice cream, milk - and lots of other goodies. We were barely able to get all of the things packed into our fridge.
It was good to see her and chat for a bit. She didn't stay long. I was exhausted and was still feeling queasy most of the time, so as soon as I said, "Okay, I have to lay down now," she was up and out. We cooked that XL pepperoni pizza for a late afternoon snack (because it wouldn't fit in the fridge with everything else), and it smelled delicious. I was very happy to eat some very small bites (literally 1 inch square bites) and even though they tasted a little bit weird on my chemo tongue, I was ecstatic that I could keep it down.
With the accomplishment of taking in small amounts of solid food and keeping it down, Monday and Tuesday showed even more improvement. My husband figured out that the Zofran was working much better than the Compazine. We started taking them in a staggered way that was more beneficial for me, resulting in no vomiting, plus, we were both able to get more sleep, during the day and at night. Wednesday and Thursday were nearly nausea-free, and by Friday, one week from chemo, I almost felt normal.
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