Originally Posted on FaceBook Oct 2014
Doing well, or not doing well? Hmm it’s tough to say.
My head feels funny, my body feels funny, my legs feel like lead, and walking up the stairs was rough. Much of that may be related to the meds I’ve taken for side effects. Fasting for 3+ days can also do that. Over all, it’s not bad per se, but I definitely don’t want to feel like this for long.
Oh and I’m glowing orange right now. I figure I’d better mention it b/c it took Ryan and I aback today. I can usually control it with diet, I have Gilbert’s Syndrome, but fasting causes my bilirubin levels to skyrocket – usually I’ll have a tinge of yellow in my eyes. Today even wearing ‘good’ colours can’t hide my yellow/orange skin. Chemo can also cause liver problems, but this is not related to chemo – and should dissipate a few days after I begin eating again – but don’t be alarmed if I look really yucky! 🙂
I’m hungry. I was hungry to the point of feeling nauseous, so I had some amazing lentil soup. Not much, just enough to take the edge off. Fasting can only help if it doesn’t actually make me sick.
I have a checklist I’m supposed to fill out each day. It’s a list of side effects a full page long. I’m supposed to make a note if I have those at all during EACH day until the start of the next cycle. I also have to rate how bad. And if it gets to a certain point, I’m supposed to call the Cross, health link, or even head to the ER in certain cases. Today I can happily check of no symptoms in most cases, however, I am no where near my normal activity level this evening. I hope that tomorrow is much better as I come out of my fast.
I really appreciate all the positive messages and thoughts today. It really helped me stay positive. I feel very loved today.
I also have to say an amazing THANK YOU to all who sent food, watched our LOs, offered free parking, and cleaned our house! (I know how dirty our house was so that was a huge HUGE undertaking, and we really appreciate it)!
Heading to bed 3 hours earlier than usual now. Good night, and thank you for the amazing support.
The past few days have been difficult. The one medication I take to combat side effects, has a whole pile of other side effects that make life difficult. Some of those include feeling like my gut is full of lead. I eat, and then the food just sits there for hours. It sucks. It also makes my limbs feel weak, leaden. I feel fine, and then I take it, and I feel yucky. Fun. But the ‘best’ part is I have to take it twice a day, and the second dose prevents me from sleeping. So I stay up half the night, then when I wake up in the wee hours of the morning, I can’t fall back to sleep. So max 4 hours of sleep a night, when I should be healing.
Today was the first day I didn’t need to take the drug. Yay. The problem is that my body is so tired from not sleeping for the past 3 days that I just can’t move. I stayed in bed until 10 today, and was back down to nap by 2.
According to my handy-dandy checklist of symptoms, this is something that warrants calling the cross about and discussing. So I did. They said, ‘Yeah, that sucks, that’s one of the side effects, but about 2 days after stopping that drug, you’ll feel better.” So hopeful tomorrow will see improvement, and the day after will be even better.
The good news is that this is the only real side effect I have, and it could be worse. But it is very frustrating to not be able to pick up my sweet little baby for more than a few moments before my arms just weaken too much to hold on anymore, and there’s no way I could pick up one of my big girls.
I can clearly see I’d better make a concerted effort during the good days to exercise so I don’t waste away!
It’s been very difficult for our family. We’ve been graciously blessed with friends that have cleaned our home and cooked us food. And as much as I love a treat now and then. This is different. Our home was a mess, not the typical 4 kids and a dog mess, it was gross. After 2 weeks of tests and appointments, dishes were piled up, bathrooms were filthy, and we couldn’t find floors or countertops in most rooms. It’s one thing to have someone come and help out. It’s very different to admit you just aren’t coping with day to day life.
It’s almost painful to look around and weigh the importance of what needs to be done, to decide what can wait 6 + months to finish – or even start in some cases. It’s difficult to want to do something, but then be too tired to even walk into the other room, let alone do anything more than that.
It’s difficult to sit today with the gorgeous snow outside, our girls building snowmen, and me sitting inside, not joining in. Our lives are going to be changed over the next few months. I don’t know what to expect. Is today the worst of it, and then it gets better? Or is round one the best of it, and day 4 of round 2, day 4 of round 6, day 4 of round 8 going to be even worse?
Those are questions with no answers. Educated guesses can offer some guidance, but those guesses do not bring peace.