Well, I actually feel like a normal person today..... Almost. I am still lightheaded, or dizzy or rummy or whatever you use to describe what my head feels like. At least I am not feeling that out of body-ness. My bones are starting to feel attached to my muscular system and I can almost tolerate food again. I think I may have lost 5 pounds. But it is the feeling of post-stomach flu feel - like you don't feel successful in loosing weight, just empty and wanting to get energy back. I am writing this to not discourage anyone, just to get it down on paper and be able to remember it later. One way I was feeling at the beginning of the week, someone said that it sounded like I was depressed. I wouldn't say I was depressed (do people who are depressed feel like they are depressed or that is their normal way of feeling?) Honest question, not meant to judge, just understand. I didn't feel depressed, just unmotivated, and uncaring. I just couldn't get myself to move. I was groggy and dizzy, so even though moving wasn't taxing, I just didn't want to because it made me feel off.
I would be able to get up and get a few things done. I could make a meal for myself, just didn't feel like eating it, but I had to eat or I'd get sick. Monday and Tuesday, I was pretty much out of it. I was able to say goodbye to the girls in the morning, then spent most of the day on the couch or in bed. I can't even read cause I can't focus my mind. Watching TV didn't give much enjoyment. I did start with watching "The Hobbit", but that was too emotional and depressing. Someone suggested comedy, so I started on MASH and with over 400 episodes, I hope that will carry me through the next few months.Wednesday I could get up and make breakfast (cereal) and lunches for the girls. Thursday a little more and Friday was even better. I cleaned the kitchen, walked to school (the girls are riding bikes, so I didn't keep up with them, but I did the mile round trip). I even showered the majority of days this week!!! I ended up not going to a lunch activity because of the fact that I had heard some people had colds and I wasn't sure with my low energy, etc if my blood counts are low.
Today, we got up and had a cleaning day. I cleaned the bathroom and dusted the upstairs. Then coordinated the girls getting their cleaning done. We sorted out some stuff in the play room and I made, ate and somewhat enjoyed lunch. I even made dinner yesterday which was a type of taco soup - so in the crock pot and cooked all day. I need crock pot ideas. I haven't had success with some crock pot recipes because if it calls for little or no liquid, the chicken seems to turn out dry to us. And one thing that I am having to have is moist food.
My face is really bad. I guess I would choose face sores over mouth sores, but I look like I've just gotten a bad case of chicken pox or that I am a teenager with no clue on how to clean my face. I just threw away all my make up since I heard that I want to keep things as clean as possible - and with most of my makeup several years old, I thought it was time to pitch it. (one blush I have is from college)What I use frequently is not that old - but I hang on to things "just in case". I'll be set for Halloween, just be Igor or someone with a scarred up face. I have a little neuropathy, more of that feeling of things not being connected. My bones don't ache any more, that lasted for a couple of days. Lead weight feeling was a few days. My mouth is super dry - thus the need for moist food. One thing that sounded really good was a steak salad from Costa Vida (Cafe Rio style). The first bite was super spicy. Now, I am already a spice-wimp, but this burned my mouth. The next night we had something that was a little spicy - I guess my dry mouth is also a sign that my taste-buds are super sensitive. I am also having bouts of diarrhea. The first couple days was some constipation, but since Monday, it's been the other. I can control it with Imodium, but it isn't taking it away. My thought when it comes to illness - just a regular illness like the stomach flu, I feel like my body is getting rid of something so if it just stays around for a day I don't like to medicate it. Unless of course there is the risk of dehydration or something like that. Well, not so with this. I don't know if it would be the same without the medication, but I am happy for it. I'm pretty sure I am not getting dehydrated, because it isn't going on all day, just now and then. And I am keeping fluids down and my pee isn't really super yellow.
I need to go down the list of side effects and check to see how many I have. I don't know what else there is, but I am feel bombarded with them! I called the nurse on Thursday because I was worried about the side effects still being so bad. I expected to have them, just that they would start to ease off a little after a week. She went through all I had and I felt better going over those with her. I have heard that one establishes a pattern, and I sure hope that I haven't. I don't really want to be out of the loop for a whole week. I am hopeful that because 2 of the drugs I got a larger dose it being the first infusion, so hopefully it won't be as harsh next time. I hate to think that that stuff is still floating around inside me - unless of course it is doing its stuff and knocking out those nasty cells.
But, today is a new day - tomorrow will be another one! Onward and upward!
Nicely and honestly-documented. You may be happy to have this as a measuring tool. My cancer journal served that purpose, and as I read yours, I wish I had been a little more nitty-gritty with the details. Good for you!
ReplyDeleteHeidi,love. I did get onto your blog and like being up to date, finally! I awoke this morning at about 3:00 a.m. to the sound of pouring rain. You can guess how long it has been since we've heard that! It was glorious and went on for hours. I wish you could have someone there with you all day so they could keep you occupied and resting. I know you think I don't know what I am saying, but you do need to rest and store it up so that your body will have the energy to fight the fight it has to. Have you talked to your doctor about possibly walking a mile??? I think that you will find out that you need to be a couch potato the further this goes on, because you won't be ABLE to do the cleaning and cooking and walking! Your surgery will teach you that too because it will take at least a year or more to recover from the surgery and anesthesia! Let it come slowly and get your mind and spirit around the fact that you MUST eat and rest and sleep. Remember that Jeff nor other people have any idea how to help you or do things for you. You will have to tell them. How about some
ReplyDeletebooks on tape from the library so you won't have to use your eyes. Cool cloth on forehead? Cold drinks? Try using Biotene, which is an
over-the-counter dry-mouth rinse. I used it after my knee surgery and it really helped. You can also suck on some hard candy or chew gum to help the dryness. I think of you every, every, day and night and will keep my positivity to be sending it to you. Have the girls do
little chores for you, maybe read to you, or get water or juice or ice cream! Try to be comfortable and at peace with the situation and it
will pass without the stress it brings on. I love you, Heidi! Alway have and always will. Follow the directions you've been given and ask
for more. BTW, do your doctors know you were exposed to Chernoble during your mission? Be sure to tell them and it might help them.
Be peaceful and happy and love yourself and those around you. My love, Aunt Barbara
Glad you're feeling better. I'll email you my fav crock pot recipes.
ReplyDeleteI can also send you some crock pot recipes. I have a poppy seed chicken rice recipe that I used to make a lot (before moving to Montana) and I took it over to my friend one night for dinner. (she was having chemo treatments as well) Her husband returned the dishes a week later and told me that of all of the food that had been taken into their home over the prior months, this dish was by far he favorite. He mentioned that she had a hard time with most foods and especially if they were spicy and dried out like you mentioned on your post. I will send you that one as well. Super easy to make too. Wish we lived closer - we feel helpless so far away!
ReplyDelete