I don't know.... But I am thinking "this time next week, I'll be on my way out of the slumps". Tomorrow doesn't scare me, it's the few days after that do. Not really scare, but I am not looking forward to the next week. What I remember most is that I cannot tolerate water, but I have to drink it. One thing that made it unbearable was having to mix the L-Glutamine in water. It is supposed to be tasteless, but it combined with the already hard to tolerate water, made me want to gag every time I drank any water. But I have now combined that with juice and it was better. Don't know if I can tolerate juice, but I hope so. I also know that I was extremely fatigued. Not sleepy tired, but out-of-body not able to move type tired. I know that it gets better as the days go on. Last time, it felt like it would never end as each day got a little better, but not much. I know to move around as much as I can. It took me mental exertion to get myself up and off whatever I was glued to, but once I did I could move without much problem. I just got so bored doing whatever I was doing. I couldn't focus on anything and the days just dragged on and on. I have found some shows to watch that may help the time go by quicker. I also couldn't sleep, so the thought of going to bed at night was what scared me the most. I knew I would have weird dreams and not sleep, so I just didn't want to face that. The doctor told me I could take Tylenol PM and she gave me a prescription for something if that doesn't work. I also hope I have the diarrhea problem understood and will do the right things this time so it doesn't drag on as long as it did.
So, It sounds like I am all ready for this next round. Maybe I am, we shall see. I have had almost 2 weeks of normal everyday living and enjoyment. Even my tastebuds have bounced back to where I can enjoy most of the food I eat. Luckily, chocolate doesn't do anything for me, even now. I want it to taste good when I make my Christmas candy, but other than that, it just isn't appetizing to think of eating any type of goody. I have stocked up on yogurt (Thanks Stacy for introducing me to Noosa, I am addicted and I hope it tastes good next week as it's a great grab and open food). That's what I found was easiest, which I didn't have much of. Open the fridge and grab something that is already to eat. Maybe heat up was the most I could do. Good thing goodies didn't sound good or taste right as I would have eaten my way through all the candy and cookies in the house. I am getting some soups today and will have some fruit on hand. I did find out that raw fruits and veggies were the biggest contributing factor to the diarrhea problem. So I am cooking everything I eat. I am also glad it's fall so soups will be more appropriate to have and I'm not heating stuff in 90 degree weather.
Well, off to get the supplies that I still am lacking and other errands. Don't know when I'll be able to write again, but at least we are over all the "firsts"! This time tomorrow, I'll be able to say I am 1/3 of the way done!
Wednesday, September 23, 2015
Friday, September 18, 2015
Hair Today....Gone Tomorrow
Monday, I had my follow-up with Dr. Sri. My blood work looks great. I don't know how long it takes for blood to change, but it would have been nice to have a test sometime in the week following my treatment day. When I was feeling the less energy and heavy weight feeling. Just to know what was lacking if anything. I don't know what they test for, but I am sure red and white blood cells is part of that test. The doctor was surprised at the condition of my face. It had gotten much worse on Sunday. I didn't know what to do for it. I didn't want to put oily or alcohol based products on it, so I just didn't do anything. That was probably the first mistake. It was so sore and itchy and dry. The nurse did say that a face rash is normal - this one is BAD. My whole forehead and about an inch or more on each side of my nose and my whole chin was bright red - almost purple. Anyway, she put me on an antibiotic (thankfully the insurance paid for it as it is over $200). By now (Friday), the intensity of the redness has gone down a lot. Instead of one big patch of redness, each individual "pimple" is just red. They aren't really pimples - they are mostly red bumps, but I don't know what else to call them. They aren't as itchy. I have tried cortisone cream a couple times. I am washing with Neutragena and using lotion frequently, so it isn't getting as dry. I am not looking forward to this happening every time and going on for so long. For now, it looks like I'll have a week of uselessness, a week of looking weird and a week of maybe normalness?
Well, one other milestone has come and I am over it. The one thing I really wasn't looking forward to was dealing with not having hair. Tuesday I still had hoped that my hair might stay. Jeff had a couple clients come in who either themselves or someone they were close to didn't loose their hair. He made sure that they went through chemo. A lot of people say "I had breast cancer and I didn't loose my hair" when their treatment was actually radiation only and did not include chemo. But, no, these people did have it and didn't loose their hair. That evening, I would scratch my head and a clump would come out. Wednesday when I was putting stuff in my hair after my shower, a lot more hair came loose and a couple big clumps even came out. "Well, maybe it will just thin and not all fall out" I thought. No! When I got back from taking the girls to school (A had her luggage for 6th grade camp), I stood outside and ran my fingers through my hair. Every time, I had tons and tons come out.
My good friend Stacy came over that morning and we had a fun day laughing and reminiscing and she went through some of my blog which she hadn't gotten to very much. She brought her food processor because she didn't know if I had one. She made avocado chocolate pudding. Avocado, maple syrup, vanilla and cocoa and banana. The same texture and close to taste of pudding! She also brought something that I am going to buy by the case for my next 'blech' week. It is called Noosa. It is a flavored yogurt. She brought pumpkin and I LOVE IT!!! (it is made with whole milk, so that is one thing about it that helps make it super yummy).
We finally said "OK, let's do this". She had brought her razor set and we went on the back porch and got to it. It was a cool day, but sunny and that felt good to sit in the warmish sun. She took lots of before, during and after pictures. I really, really had fun with the whole process, I just wished that my face didn't look so bad in all the pictures as that is all I can notice. I should have put some makeup on to have the focus be on my head and not my face. I had her give me a mohawk first, and sent that to Tori. She put it up on facebook. I told her she wasn't the only Howell to be able to sport a mohawk.
Now I just need to put one up side-by-side of me and Carter with buzzed heads. It is really something I never would have known, that we have the same hairline and highlights. With all the fun we had, I have been able to face this obstacle with a fun approach rather than with a scared or worried attitude. If she hadn't of come, I probably would have just done it myself, but that would have been a completely different feeling with the whole thing.
(wish I could have gotten those two pictures closer together....)
My visiting teachers came over this morning and we had a lot of fun and laughs. They have been so good and I know that I can call them for anything. We talked about what I need, what will help me through my yuck week. Luci gave me a list of 'gooey' food. I told her that was what I most was able to handle eating. She is going to make me some custard, a recipe her mother always made. Lavena gave me some lavender flavored lotion, so that will help with my sleeplessness and dry skin. They just went out, got, and dropped off some scarves! What wonderful ladies. We talked about how I tried on the different hats that I have and that I figured that I need scarves to wear turban style. That is what I found looks best. The wig I got from Joanne is uncannily like my "old" hair. Lots of people thought that the pictures I sent them, the bald head is the after pic when in fact the bald is before and the wig is the after. I will try to get those pictures on here. My presidency and Amanda all asked me if I had gotten a haircut or highlights. (I went up to Amanda's camp yesterday to help out and to see her since I wasn't able to chaperon the whole thing.)
This has taken me a long time to figure all this out with the pictures. They were on 3 different devices, and I just might now finally know how to transfer them, download them and share. I just wish I had a good editing program that I don't have to go onto my old, old, old computer to use. I would like to maybe touch-up, but it would be fun to crop, and maybe have made those two pictures of me and Carter into one double picture like what Tori did with the two of our pictures. I know it must be simple, but I need direction for those types of things.
Well, one other milestone has come and I am over it. The one thing I really wasn't looking forward to was dealing with not having hair. Tuesday I still had hoped that my hair might stay. Jeff had a couple clients come in who either themselves or someone they were close to didn't loose their hair. He made sure that they went through chemo. A lot of people say "I had breast cancer and I didn't loose my hair" when their treatment was actually radiation only and did not include chemo. But, no, these people did have it and didn't loose their hair. That evening, I would scratch my head and a clump would come out. Wednesday when I was putting stuff in my hair after my shower, a lot more hair came loose and a couple big clumps even came out. "Well, maybe it will just thin and not all fall out" I thought. No! When I got back from taking the girls to school (A had her luggage for 6th grade camp), I stood outside and ran my fingers through my hair. Every time, I had tons and tons come out.
My good friend Stacy came over that morning and we had a fun day laughing and reminiscing and she went through some of my blog which she hadn't gotten to very much. She brought her food processor because she didn't know if I had one. She made avocado chocolate pudding. Avocado, maple syrup, vanilla and cocoa and banana. The same texture and close to taste of pudding! She also brought something that I am going to buy by the case for my next 'blech' week. It is called Noosa. It is a flavored yogurt. She brought pumpkin and I LOVE IT!!! (it is made with whole milk, so that is one thing about it that helps make it super yummy).
We finally said "OK, let's do this". She had brought her razor set and we went on the back porch and got to it. It was a cool day, but sunny and that felt good to sit in the warmish sun. She took lots of before, during and after pictures. I really, really had fun with the whole process, I just wished that my face didn't look so bad in all the pictures as that is all I can notice. I should have put some makeup on to have the focus be on my head and not my face. I had her give me a mohawk first, and sent that to Tori. She put it up on facebook. I told her she wasn't the only Howell to be able to sport a mohawk.
Now I just need to put one up side-by-side of me and Carter with buzzed heads. It is really something I never would have known, that we have the same hairline and highlights. With all the fun we had, I have been able to face this obstacle with a fun approach rather than with a scared or worried attitude. If she hadn't of come, I probably would have just done it myself, but that would have been a completely different feeling with the whole thing.
My visiting teachers came over this morning and we had a lot of fun and laughs. They have been so good and I know that I can call them for anything. We talked about what I need, what will help me through my yuck week. Luci gave me a list of 'gooey' food. I told her that was what I most was able to handle eating. She is going to make me some custard, a recipe her mother always made. Lavena gave me some lavender flavored lotion, so that will help with my sleeplessness and dry skin. They just went out, got, and dropped off some scarves! What wonderful ladies. We talked about how I tried on the different hats that I have and that I figured that I need scarves to wear turban style. That is what I found looks best. The wig I got from Joanne is uncannily like my "old" hair. Lots of people thought that the pictures I sent them, the bald head is the after pic when in fact the bald is before and the wig is the after. I will try to get those pictures on here. My presidency and Amanda all asked me if I had gotten a haircut or highlights. (I went up to Amanda's camp yesterday to help out and to see her since I wasn't able to chaperon the whole thing.)
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| Before |
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| After, after |
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| After |
Saturday, September 12, 2015
What a Difference a Day Makes - or 2 - or 5
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!
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!
Tuesday, September 8, 2015
To Be Human Again
I have something that is called an Earworm - it is when you have music going through your head and you can't get it out. It happens constantly. At Christmas time, I always wake up with a carol going through my mind, it could be halfway through the song - it is just like I opened the door in the middle of a concert or someone playing something. Tonight, it was this song from Beauty and the Beast - how appropriate. I feel almost human again today. Problem with it is, that I am sleeping so poorly, I wake constantly (like every 45 minutes) with a song in my head, and I can't get back to sleep because of the song playing itself out. At least last night, I was able to get right back to sleep without much trouble.
It is not quite 7:00 and the first day of school for A and N. They are excited. A not so much as she really, really wants to homeschool. That is definitely in our future, just not this year.....
I am hoping that in 2 hours, I will feel well enough to take them to school. We live just half a mile from there, and I walk or ride bikes with them. I don't think I will be up for that. There is a parent assembly, but I double checked with my friend who is on the PTO, if it was important information or a kind of pep rally, and I think it is more the latter. So I am not stressing myself out to get there for that. As long as I remember to take first day pictures, I will call it a successful day.
I am so tired of being in a reclining position. I have either been in bed or on the couch for 4 days. Yesterday, Jeff and I took a 'turn' about the neighborhood and it felt good to get outside. I can walk, it's just that I am unsteady and I get tired easily. I guess today, I'll just make sure to walk around the whole house once every hour or so. Things aren't tasting good still. I seem to have a really dry mouth, so that is affecting flavors. Jeff made home made tortillas last night for tacos, and they were good, just seemed dry to me. I ended up eating a bowl of cereal. This morning, I have already had 2 bowls of applesauce. The wetter, the better! I am also sensitive to smells. Saturday morning, bacon was on the menu and the only bacon to be had was a maple flavor. The smell is lingering and every time I open the door, I can smell it. It is a sickly sweet - now old sickly sweet- smell. Ugh! I have tried neutralizing the air and even opened all the windows even though it is only barely 70 outside. I hope today it will be a little warmer so I can bundle up and open the windows.
So, my schedule so far. On infusion day, I seem to do well, come home and rest a little. Slept well the first night. The next day, morning seemed normal, but by afternoon (after the neulasta shot), I hit the wall. That night was not good, next day feel like lead weights are hanging from me - or that I am made completely of lead. Eat ok, but can't get comfortable. I don't know if that's because I am body tired, or my body is tired of not moving. No sleep really that 3rd night. The next day (Sunday) I feel a little better, can get up and moving a little, nothing tastes good still, and my only relief is ice chips - kind of feels like I'm cooling down a burned tongue - the tongue doesn't feel hot, just that I've lost all taste-bud function. Sleep better the 4th night and the next day feel a little better. Need to get moving more that day and keep wet food and liquids on hand. I even had a cup of hot chocolate with Mother before they headed back home. Funny thing with the dry mouth, popcorn tasted pretty good to me. Maybe I need some salt as all the liquids are flushing everything out. My digestion seems to be ok - manageable. Every time I woke up the last few nights, I feel more tired or body sore than when I went to sleep.
Well, I am over doing my energy level. I tried to do my back exercises, and got a little bit along on those. Another funny thing, like with the exercises, I feel out of body - like I am doing the exercises, but there is nothing there responding to them. The muscles don't feel like they are there, just an empty body. It has been hard to type, text and do the ipad for that same reason. My fingers are there, they just feel like they are not a part from my body or not attached in any way. Makes for slow response.
It is not quite 7:00 and the first day of school for A and N. They are excited. A not so much as she really, really wants to homeschool. That is definitely in our future, just not this year.....
I am hoping that in 2 hours, I will feel well enough to take them to school. We live just half a mile from there, and I walk or ride bikes with them. I don't think I will be up for that. There is a parent assembly, but I double checked with my friend who is on the PTO, if it was important information or a kind of pep rally, and I think it is more the latter. So I am not stressing myself out to get there for that. As long as I remember to take first day pictures, I will call it a successful day.
I am so tired of being in a reclining position. I have either been in bed or on the couch for 4 days. Yesterday, Jeff and I took a 'turn' about the neighborhood and it felt good to get outside. I can walk, it's just that I am unsteady and I get tired easily. I guess today, I'll just make sure to walk around the whole house once every hour or so. Things aren't tasting good still. I seem to have a really dry mouth, so that is affecting flavors. Jeff made home made tortillas last night for tacos, and they were good, just seemed dry to me. I ended up eating a bowl of cereal. This morning, I have already had 2 bowls of applesauce. The wetter, the better! I am also sensitive to smells. Saturday morning, bacon was on the menu and the only bacon to be had was a maple flavor. The smell is lingering and every time I open the door, I can smell it. It is a sickly sweet - now old sickly sweet- smell. Ugh! I have tried neutralizing the air and even opened all the windows even though it is only barely 70 outside. I hope today it will be a little warmer so I can bundle up and open the windows.
So, my schedule so far. On infusion day, I seem to do well, come home and rest a little. Slept well the first night. The next day, morning seemed normal, but by afternoon (after the neulasta shot), I hit the wall. That night was not good, next day feel like lead weights are hanging from me - or that I am made completely of lead. Eat ok, but can't get comfortable. I don't know if that's because I am body tired, or my body is tired of not moving. No sleep really that 3rd night. The next day (Sunday) I feel a little better, can get up and moving a little, nothing tastes good still, and my only relief is ice chips - kind of feels like I'm cooling down a burned tongue - the tongue doesn't feel hot, just that I've lost all taste-bud function. Sleep better the 4th night and the next day feel a little better. Need to get moving more that day and keep wet food and liquids on hand. I even had a cup of hot chocolate with Mother before they headed back home. Funny thing with the dry mouth, popcorn tasted pretty good to me. Maybe I need some salt as all the liquids are flushing everything out. My digestion seems to be ok - manageable. Every time I woke up the last few nights, I feel more tired or body sore than when I went to sleep.
Well, I am over doing my energy level. I tried to do my back exercises, and got a little bit along on those. Another funny thing, like with the exercises, I feel out of body - like I am doing the exercises, but there is nothing there responding to them. The muscles don't feel like they are there, just an empty body. It has been hard to type, text and do the ipad for that same reason. My fingers are there, they just feel like they are not a part from my body or not attached in any way. Makes for slow response.
Saturday, September 5, 2015
To Feel or Not to Feel
It is Saturday, two days after my first infusion. Thursday night was pretty good. I was able to stay awake until a regular bedtime and have a good nights sleep. Friday, I got up and went for a walk with my mom and dad. Not too far, but it was nice to get out in the cold air. My ears got really cold- it was 46 degrees! I had a pretty good morning, doing not a lot, but making myself some breakfast and getting showered. I had to go back for a neulasta shot- white blood count booster. When I got home, I was wiped out. I took a long nap and then just lazed for the rest of the evening. I went to bed a little early, and tossed and turned from about 1:00 on. I just got out of bed at noon. I feel like my arms are made of lead weights and I just can't get moving. I did forget to take my 2nd steroid pill last night (supposed to take 1 twice a day the day before and the day after infusion day. I took that this morning. I have also downed some Claritin (good for achy bones after the neulasta, anti-constipation pill and anti-nausea). I'm becoming a walking medicine cupboard. I am up, but not doing much. But I feel a little better than a couple hours ago.
Thursday, September 3, 2015
One Down, 5 to Go or There's No Place Like Home
Found out the brain MRI came back clear!!!! The cancer is in the right breast, and two lymph nodes with a small questionable spot in the left breast.
Well, it is over. I now know what to expect at least as far as the actual treatment day. We left at 8:05 this morning and got home at 5:15. I had a blood draw, then met with Dr. Sri for a nice visit. Jeff was able to come in and at least meet her. She explained all that will happen and why. I then was sent back to the chemo room and chose where I wanted to be. About half the chairs were filled up. Today was so long because a couple of the drugs have to be given in a higher dose the first time. There is also a couple that will be given together next time that they do separately to make sure I don't have any reaction to it. Next time it should be about a 4 hour stint, after they get me hooked up. That doesn't include the blood draw and any visit with the doctor.
Mother came with me and we chatted for a while, played iPad games and snacked. Joanne came up and we had a nice visit with her. As soon as they put the bag of Benadryl on, I immediately felt tired. I don't know what it is for, but it is one of the preventive meds. So I took a little nap (I was aware of what was happening, but rested a little. Mother and Joanne went out to a nice lobby the building has. The visitors chairs in the chemo room aren't comfy for long periods of sitting. The lady next to me and her daughter were playing a card game, so when we were getting all unhooked, they taught it to us. Looks like a nice fast game.
Besides feeling tired right now, I am doing pretty well. Dr. Sri, told me to go ahead and take the anti-nausea med on a schedule for the first few days rather than wait to feel nauseous. All I've read about it, I hear the best thing is to pop it right when you feel any kind of nausea and to not tough it out. I have been doing liquids all day, so that will help a lot. I did start with L-glutamine yesterday. That's supposed to help with neuropathy and mouth sores.
I'm off to get some rest and a snack, not particularly in that order.
Well, it is over. I now know what to expect at least as far as the actual treatment day. We left at 8:05 this morning and got home at 5:15. I had a blood draw, then met with Dr. Sri for a nice visit. Jeff was able to come in and at least meet her. She explained all that will happen and why. I then was sent back to the chemo room and chose where I wanted to be. About half the chairs were filled up. Today was so long because a couple of the drugs have to be given in a higher dose the first time. There is also a couple that will be given together next time that they do separately to make sure I don't have any reaction to it. Next time it should be about a 4 hour stint, after they get me hooked up. That doesn't include the blood draw and any visit with the doctor.
Mother came with me and we chatted for a while, played iPad games and snacked. Joanne came up and we had a nice visit with her. As soon as they put the bag of Benadryl on, I immediately felt tired. I don't know what it is for, but it is one of the preventive meds. So I took a little nap (I was aware of what was happening, but rested a little. Mother and Joanne went out to a nice lobby the building has. The visitors chairs in the chemo room aren't comfy for long periods of sitting. The lady next to me and her daughter were playing a card game, so when we were getting all unhooked, they taught it to us. Looks like a nice fast game.
Besides feeling tired right now, I am doing pretty well. Dr. Sri, told me to go ahead and take the anti-nausea med on a schedule for the first few days rather than wait to feel nauseous. All I've read about it, I hear the best thing is to pop it right when you feel any kind of nausea and to not tough it out. I have been doing liquids all day, so that will help a lot. I did start with L-glutamine yesterday. That's supposed to help with neuropathy and mouth sores.
I'm off to get some rest and a snack, not particularly in that order.
Sleepless in Spokane
This is somewhat normal for me. A few nights every month, I have a tendency to wake up after midnight to use the ladies room and not be able to go back to sleep for a couple hours. Tonight, it may have something to do with all that will be happening tomorrow. I also had a thought that I told someone I would schedule the church building for our RS activity coming up in a couple of weeks as she wasn't able to do it and it is an online thing, not a call the building scheduler person. I checked and it was totally easy-peasy! (rice and cheesy).
So, being on here, I thought I'd just check in one last time. My parents showed up around dinner time last night and we had a WONDERFUL steak dinner. When we were waiting for it all to finish cooking, there was a knock at the door. One sister from the ward (the compassionate service lady), showed up with a loaf of fresh bread. It would have been delivered warm if I had been home earlier in the day when she dropped by the first time. YUM! Good thing, as that was one thing I didn't get while out on Monday. I sat down and 5 minutes later my neighbor knocked on the door with some delicious chocolate/fruit cups! Dark chocolate cups with berries and chocolate mousse! YUM! again.
People have been so nice, wonderful and thoughtful. I am sure learning how easy it is to do something that has a large impact. I am so overwhelmed with all the thoughtful things people do. My mother and dad showed up and gave me a fall quilt to use to keep warm in the chemo room - it is cold in there! Of course Jeff and the girls are so thoughtful. They step right in when there is any kind of need. Jeff came home today and said there are lots of people from work - the front office gals to his clients who are praying for me. That has been the constant offer from family, friends and even strangers - "I will keep you in my prayers". I know that is the one thing that is keeping me calm and sane. There is no way at all that my personality would have me naturally be this way. I would maybe at the most look it on the outside, but on the inside, I would be all churning and worried, and I wouldn't be sleeping being kept up with a wandering mind of all the possible things that could go wrong.
THANK YOU!
Well, it's been 1 1/2 hours, so I have a chance to get to sleep again soon! God natt.
So, being on here, I thought I'd just check in one last time. My parents showed up around dinner time last night and we had a WONDERFUL steak dinner. When we were waiting for it all to finish cooking, there was a knock at the door. One sister from the ward (the compassionate service lady), showed up with a loaf of fresh bread. It would have been delivered warm if I had been home earlier in the day when she dropped by the first time. YUM! Good thing, as that was one thing I didn't get while out on Monday. I sat down and 5 minutes later my neighbor knocked on the door with some delicious chocolate/fruit cups! Dark chocolate cups with berries and chocolate mousse! YUM! again.
People have been so nice, wonderful and thoughtful. I am sure learning how easy it is to do something that has a large impact. I am so overwhelmed with all the thoughtful things people do. My mother and dad showed up and gave me a fall quilt to use to keep warm in the chemo room - it is cold in there! Of course Jeff and the girls are so thoughtful. They step right in when there is any kind of need. Jeff came home today and said there are lots of people from work - the front office gals to his clients who are praying for me. That has been the constant offer from family, friends and even strangers - "I will keep you in my prayers". I know that is the one thing that is keeping me calm and sane. There is no way at all that my personality would have me naturally be this way. I would maybe at the most look it on the outside, but on the inside, I would be all churning and worried, and I wouldn't be sleeping being kept up with a wandering mind of all the possible things that could go wrong.
THANK YOU!
Well, it's been 1 1/2 hours, so I have a chance to get to sleep again soon! God natt.
Wednesday, September 2, 2015
When it's time to Change, You've got to Rearrange.....
I originally titled this "a New Chapter", but this evening I couldn't get this song out of my head. Any guesses on where the song comes from?
Well, today marks the last day of my 'normal' life. Even after chemo is done and all the other stuff following and recovery, etc - my life will be a new 'normal'. I feel like a soon-to-be mother with a scheduled C-section with her first child. I know it is coming, I have been preparing for it, but tomorrow will begin a whole new experience for me I can only prepare for in theory - it's another thing dealing with reality.
I don't really know what to discuss. I had heard from a neighbor about a friend of hers who did something that helped her keep her hair even during chemo. I looked it up and there are some developments in that area for chemo patients. Apparently if you can cool the head down during the whole time of receiving the treatments, then most of the patients were able to keep their hair. Some lost up to 50% of their hair, but most kept all or most of it. Well, the treatments involve renting (for lots of $$) some caps that have to be kept at -22 F which involves either a special sub-zero freezer or dry ice and when changing the caps, you have to be fast about it as you don't want the scalp to warm up, and you have to change them every half hour. The other solution is still being developed (in Sweden !yea!) but isn't widely available here yet. It involves wearing a cap that has tubes of coldness running throughout the cap to keep the scalp at a very low temperature. The idea is that if the blood vessels are kept cool, they won't have as much blood flow, so they won't have as much of the drugs going through that part of the body, so it keeps the drugs from reaching the hair follicles, thus damaging them and making the hair fall out. Well, I am not up for either of those options. 1) I don't have the money to rent these things, and 2) the other ones aren't offered in my area. I don't know if I would be able to handle 4 hours of having my head frozen. It would maybe be worth it if I could keep my hair. - Oh Well.
I am hoping to keep up with this to write down how I feel every day and what side effects I may be experiencing.
Today, I finally got around to starting some supplements, which I have read or heard I should stop the day before treatment. (oops) I got my prescriptions yesterday, one for the day before and day after, the others were two different kinds of anti-nausea. I started with some vitamin-D, L-glutamine and vitamin-E. Mostly all of them are for neuropathy, the vitamin D also for energy and 'chemo brain'.
Tonight I am requesting a dinner of steak, baked potatoes, and big green salad. I hear that my taste buds may not be up to par for the next little while, so I want to get a great meal in before that happens. I remember the last two pregnancies where everything tasted like sawdust - not fun! and I had to keep eating to not be sick. I got really tired of eating or coming up with things to eat. One nice thing on the nausea side; the nurse who lead my class did say that it is possible that my susceptibility to nausea during chemo may be similar to any morning sickness I may have experienced - in my case NONE! (sorry Tori) I don't expect to not be nauseous, but if it is similar to the way I controlled it then, I can do that. Lots of what ifs at this point which will be answered in the next few days!
Here's to change!
PS. It's the song the Brady Bunch sing in the episode they are recording a song and Peter's voice changes, so they come up with this one about change.
Well, today marks the last day of my 'normal' life. Even after chemo is done and all the other stuff following and recovery, etc - my life will be a new 'normal'. I feel like a soon-to-be mother with a scheduled C-section with her first child. I know it is coming, I have been preparing for it, but tomorrow will begin a whole new experience for me I can only prepare for in theory - it's another thing dealing with reality.
I don't really know what to discuss. I had heard from a neighbor about a friend of hers who did something that helped her keep her hair even during chemo. I looked it up and there are some developments in that area for chemo patients. Apparently if you can cool the head down during the whole time of receiving the treatments, then most of the patients were able to keep their hair. Some lost up to 50% of their hair, but most kept all or most of it. Well, the treatments involve renting (for lots of $$) some caps that have to be kept at -22 F which involves either a special sub-zero freezer or dry ice and when changing the caps, you have to be fast about it as you don't want the scalp to warm up, and you have to change them every half hour. The other solution is still being developed (in Sweden !yea!) but isn't widely available here yet. It involves wearing a cap that has tubes of coldness running throughout the cap to keep the scalp at a very low temperature. The idea is that if the blood vessels are kept cool, they won't have as much blood flow, so they won't have as much of the drugs going through that part of the body, so it keeps the drugs from reaching the hair follicles, thus damaging them and making the hair fall out. Well, I am not up for either of those options. 1) I don't have the money to rent these things, and 2) the other ones aren't offered in my area. I don't know if I would be able to handle 4 hours of having my head frozen. It would maybe be worth it if I could keep my hair. - Oh Well.
I am hoping to keep up with this to write down how I feel every day and what side effects I may be experiencing.
Today, I finally got around to starting some supplements, which I have read or heard I should stop the day before treatment. (oops) I got my prescriptions yesterday, one for the day before and day after, the others were two different kinds of anti-nausea. I started with some vitamin-D, L-glutamine and vitamin-E. Mostly all of them are for neuropathy, the vitamin D also for energy and 'chemo brain'.
Tonight I am requesting a dinner of steak, baked potatoes, and big green salad. I hear that my taste buds may not be up to par for the next little while, so I want to get a great meal in before that happens. I remember the last two pregnancies where everything tasted like sawdust - not fun! and I had to keep eating to not be sick. I got really tired of eating or coming up with things to eat. One nice thing on the nausea side; the nurse who lead my class did say that it is possible that my susceptibility to nausea during chemo may be similar to any morning sickness I may have experienced - in my case NONE! (sorry Tori) I don't expect to not be nauseous, but if it is similar to the way I controlled it then, I can do that. Lots of what ifs at this point which will be answered in the next few days!
Here's to change!
PS. It's the song the Brady Bunch sing in the episode they are recording a song and Peter's voice changes, so they come up with this one about change.
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