Whoa. This last treatment really threw me for a loop. For those of you who didn't know, I received a new drug cocktail this time. The first three treatments consisted of one drug (docetaxel/Taxotere), and the second set of three treatments are a combination of three (cyclophosphamide/Cytoxan, epirubicin/Ellence, and 5-fluorouracil/5-FU, otherwise known as CEF).
So, although I had adjusted (as much as one can) to the previous chemo treatments, I did not really know what to expect from this last one. It was like starting all over again, and it turned out to be much worse than I anticipated so I was wholly unprepared to cope. I'm going to relate all the nitty gritty details here so I remember for the next time and can prepare myself and others in advance. Sorry, this is gonna be looong!
With the first 3 treatments, I felt pretty much fine the first few days after the administration. Then around the fourth or fifth day after treatment, the side effects would really kick in. I was still functional but just very, very tired on the worst days. Resting and sleeping helped a lot, though. I also had an assortment of side effects (see post from August 2), but I could manage those okay with some basic prescription and over-the-counter products.
Immediately after this last treatment, I felt like someone had punched me in the stomach. It was more pain than nausea, but it was fairly strong. I was a little more tired than usual later that evening but otherwise okay. During the day on Thursday, I had a hard time sitting still and felt very tired and uncomfortable, but I still managed to get out. I also noticed that I was pretty queasy while riding the bus that day, but I was still able to eat normally.
Then, early on Friday morning, all hell broke loose. The best comparison I can make is that it was like being 40 weeks (aka 9 months) pregnant with a hideous hangover and jet lag at the same time. I honestly do not recall a time in my life when I felt so completely and utterly horrible!
After going to bed around 10:30 pm, I woke up- WIDE awake- at 2:30 am Friday morning. I had a miserable time trying to get back to sleep. I couldn't get comfortable enough in any position to relax and get my mind to realize that I needed to fall asleep again. My stomach was queasy, everything was achy, and I had to pee every 10 minutes. I'm seriously not exaggerating- EVERY 10 MINUTES! This lasted until about 4:30 am, when I decided to take a melatonin tablet to try to trick my brain into sleeping. Thankfully, I then managed to sleep from about 5 to 7 am, when the kids got up.
I was totally incapacitated throughout Friday. I couldn't eat due to my uneasy stomach, ached everywhere, was exhausted from lack of sleep and had to pee constantly. The worst part was that I was just not comfortable in any position- not laying down, not sitting, not standing- for more than 15 minutes at a time. So I really couldn't rest or sleep because I had to continuously change positions (and pee). My vision was blurry so I also couldn't read, watch tv, look at the computer or knit. I just had to sit/stand/lie there and feel awful (and pee). It was totally mentally exasperating, which didn't help me cope with the physical symptoms any better.
To make matters worse, our daycare was closed on Friday for an inservice training. So, on the day when I felt crappier than ever in my whole life, I had the kids at home with me! We had the option of putting them in a temporary daycare location for the day, but I thought that a totally foreign environment with complete strangers would be pretty stressful for them. Luckily, my friend Pam offered to come help with the kids and saved me. She took them to the park so I could have some quiet and rest, which was the only way I got through the day. I debated whether I should have put them into the temporary daycare, but I believe that they were happier being cared for in a familiar environment by a kind, loving friend whom they've at least met before. See, don't they look happy?
Another friend, Angela, came to help in the afternoon. Miraculously, both girls were asleep for much of the time she was here so she mostly just kept me company. That was a blessing, too, though, because I was then a bit distracted from thinking about how miserable I felt. One can only sit/stand/lie and stare at the walls/ceiling for so long!
Luckily, Matti came home early that day, and his mom arrived in town so they were both able to help the girls through their evening routine. I was so weak and queasy and had to keep going to lie down every 15 minutes so I wasn't able to assist much.
Throughout the day, I was only able to eat a few crackers with peanut butter, a banana, some leftover strata (a bread casserole), apple juice and water. I did try to follow the recommendation to eat very small amounts frequently, but I had a hard time even entertaining the thought of eating.
During Friday night, I woke up at almost 2:30 am on the nose again, in the same plight as the night before. Learning from that, I took a melatonin tablet. It didn't help. So I took another one. (I don't actually know if it's advisable to do that, but I was desperate!) I finally managed to sleep a bit more around 5:15, but I was still exhausted from not enough sleep. Of course, the kids were home all day again because it was Saturday...
Although I felt the tiniest bit better on Saturday compared to Friday, I was still pretty incapacitated. I wasn't able to be up and moving about for more than 15 minute periods. So I alternated between trying to help with the kids when possible (and peeing) and then lying down. I still wasn't able to sleep at all during the day. In addition to feeling physically miserable, I also felt awful that I couldn't be there for the kids. Every time I'd come into the room, one of them wanted me to play with/hold them, but after 15 minutes or so, I'd have to leave again. Leila was pretty understanding, especially given her age and temperament, but Elisa would cry as soon as I walked away. It was heart wrenching for me.
Again, Saturday night, I was wide awake (and peeing) at 2:30 am... I took two melatonin tablets nearly right away, but they did nothing this time. So at 4:45 am I took a sleeping pill and was able to sleep until almost 7:30 am on Sunday.
When I got up, I felt okay. Not good, but semi-functional. So I decided to accompany Leila to her kids' gym class so she could have some attention from me to partially make up for the previous two days of neglect. The class went really well so I was glad I went, but I was totally beat by the time we got home. I managed to nap and was then able to get through helping with the evening routine. Despite still feeling draggy, I at least managed to eat a regular dinner (finally!) and felt a bit more normal.
On Sunday night, I stayed asleep from about 11 pm until 4:30 am, when I woke up completely alert and wide awake. I moved to the couch and tried to read a bit, in hopes I'd get drowsy, but no luck. While considering whether I should take a sleeping pill, Leila woke up crying. By the time I got her back to sleep, Elisa was stirring and making noises. So I decided it was hopeless. So around 6:45 I got up and took a shower and started getting ready for the day.
Here's where the tide really started to turn- finally. Despite waking up at 4:30 am, I felt pretty mentally alert yesterday. So I went to knit at a nearby friend's house, which was just the right thing. It was low physical exertion but social and entertaining. I even managed to finish a small project I started before my cancer diagnosis! That was a great mental boost.
I had visits from two other friends in the afternoon, and that was good for my psyche as well. The social interaction definitely helps distract me from feeling blah.
I also actually felt like eating yesterday. In fact, I ate like a horse. Either I needed to make up for not eating for 3 days, or I was just so excited to be able to enjoy eating again! The only issue now is that my GI system is so confused about how it should be working, but hopefully that will resolve in a day or so.
I wasn't able to take a nap all day yesterday, but I managed to make it through the whole day until bedtime. In fact, I even had a hard time falling asleep. Maybe I was just so relieved to be feeling better that I couldn't settle down. So I moved myself to the couch again so I wouldn't keep Matti up. I finally slept from about 11:30 to 6:30, which is the longest I've slept in 4 days. I've got high hopes that tonight I might get a real night's sleep...
So today I'm just trying to catch up on everything I've ignored for days. According to my chemo veteran friends, once you start to feel better after these CEF treatments, you feel pretty good until the next one. I'm trying to capitalize on that and hope to enjoy the next two weeks as much as I can. So now I'm heading out to enjoy some (rare) sunlight and have coffee with a friend. If you don't see another post from me again soon, it's probably a positive sign! :)
6 comments:
So sorry about how hard this treatment hit you but I guess you are a little prepared for next time. Do they give you any good drugs to manage the side effects? Maybe ask your doctor or demand some! Sending lots of love from New Jersey!!!
I was taking 2 different anti-nausea drugs, 2 painkillers, an anti-heartburn medication, cortisone and sleeping pills. Nothing really helped enough. I'm going to see the oncologist on the 7th (before my next treatment) and will ask what more she can do. I honestly need something to knock me out completely so I can actually rest next time. Thanks for the support!
WISH I COULD BE THERE TO HELP!!! oh, anna. i know it must be hard leaving the kids when they want you. i'm so sorry.
sending you lots and lots of love.
oh anna, read through this entry. so sorry about the rough treatment! i really do hope they are able to help you find a way to get some sleep when you really really need it.
if you are unable to find other outlets on days when regular daycare is unavailable, dont feel bad about using temporary daycare. maybe it feels selfish but in the long run, the girls wont remember, so just do what you have to. sounds like you have solid family and friend support near you, though, which is wonderful.
hope that you do enjoy the days in between.
@Sarah- Thanks! Maybe you can help one of the next 2 times. The key thing will be getting the kids out of the house so I can try to rest guilt-free...
@Hahna- I'm really hoping the oncologist can help with the sleep issue. Thankfully, I have great friends who have been indispensable through all this. That's the one silver lining!
so sorry for how this one hit you. at least you won't be caught off guard for the next round. although you may feel guilty about not being there for the girls all the time, they will forgive you (and probably not really even remember). in their world everything is yesterday or tomorrow. take care of you now (especially right after your treatments) so you can take care of them for a lifetime... they will be amazed when you tell them stories of your 'adventure'. and will be proud indeed - as we all are of you now!! luv and hugs to you!!
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