I am sitting here with some time on my hands. I have been trying to fill the last couple weeks with projects and errands, knowing that I won't be able to do much after my surgery for a few weeks. I will not be bedridden by any means, but even small gestures with my right side are going to be verboten for at least a couple weeks. I realized this last week that we have been here a year exactly. I am pretty sure the van pulled in on the 23rd and we unloaded and started our life here in Spokane. I did leave part of my heart in Kalispell even though we were there for only a year (well, 51 weeks to be exact), but I am feeling more like this is now home. The year has really flown by, but at the same time it feels like we've been here forever. (in a good way).
Surgery is scheduled on February 1st - a week from today. I have opted for a right side mastectomy with no reconstruction. Dr. Moline did say that this does not completely close the door for reconstruction down the road. I am not thrilled to have something foreign put in my body and so I am going to use bra inserts for my natural look. I am preparing myself to not be able to move my right side for the first couple of weeks. I have been (a little) using my left hand for things like moving the mouse and pulling up my socks. Have you ever tried to pull on socks with only one hand? It's not easy. My mother went and got me a bunch of button up tops. She first sent me a video of some, but they were all size medium. I told her that I was not going for fashion, but for comfort and ease. With my armpit all bandaged up and sore (lymph node removal) I will need to be able to get in and out of tops with ease and the least amount of movement. She then found me some tops in XL and larger. Thank goodness for Value Village and that my mother likes to shop there!
Everyone has been so kind and thoughtful. I am grateful for people who actually follow through on their thoughts and ideas. I come up with great ideas and they come either too late (ie: a great idea for a birthday party game as guest are coming in the door), or I don't follow through with my ideas and thoughts. The biggest thing I am so thankful for are prayers. I know I've said it before, but I can really feel them. I have been carried on angels wings for the last 5 months. My faith in a Loving Heavenly Father and faith and prayers on my behalf have helped me be able to get through the days when I really didn't want to get through those days. They have sustained me to be able to positively head into the next round of chemo, knowing that I will get through it. I am now counting on that same thing to happen with this surgery. I am scared. I am worried. Mostly for the recovery. I really am worried about the possibility of lymphadema. This is where fluid can build up in my arm because of the removal of lymph nodes. I will do all I can under doctor's orders to prevent this. It is just the unknown of all that will be happening with my body healing and recovering that I am worried about. At least the tasting thing will not happen with this next stage of treatment. I will be so happy to never have that happen to me again. A good thing about that is that I don't have a distaste for certain foods that I force-fed myself with during those days that I just had to shove it in so I didn't faint from malnutrition. I think I am pretty much back to being able to eat most anything without any negative effects.
I don't know how the little girls have perceived me through all of this. I really haven't had to seclude myself from them except on 1 day here and there after some of my infusions. I have kept up most of my normal schedule, and been more fatigued than normal. But I know the coming weeks, they will notice a much bigger difference as I just will not physically be able to do a lot of things - and they won't be able to cuddle or give me hugs or things like that. They have been so sweet and helpful when I have needed it, that I am not worried for them. They will have to make their lunches and do their own laundry, which they aren't thrilled about - but they are perfectly capable. I am a bit OCD when it comes to laundry. I actually like to do laundry. I like to know that the clothes are all clean and put away. I have always had one laundry day for the week rather than doing a bit here and there throughout all the week. OH, well, we shall see how this all comes about. Jeff has been even more wonderful than he normally is through out all of this. Of course, he usually does a large percent of grocery shopping and cooking anyway, so we won't starve. But he has been so in tune with what I need and can't do. And then it doesn't bother him if something doesn't get done. Either he'll just go with it or do it himself. I am not worried in the least that there will be things undone or done with complaining (well, maybe a little bit of complaining on the girls' part, but they'll get over it).
The one thing that I am absolutely NOT happy about is the fact that unless he comes in the next 5 days, I will miss the birth of my first grand child. I am so, so sad about this - you don't even know. I am resigned to it, but that doesn't take away the fact that I am sad and that I will miss this once-in-a-lifetime event. I know I will see him later and all that, but this is so irreplaceable. To be there and see a birth and hold a brand-new baby. It just make my heart sad for that. Victoria had been a trooper throughout this not easy pregnancy for her. She is so ready to be over and done with it. She is going to be a great mother and I can't wait to observe that.- They both will be great parents. I am so happy for Victoria and Jesse and look forward to seeing this new little family experience their life.
I've gone on long enough. My hair is growing back in. I have a fuzzy down right now. In fact, yesterday when I took of the scarf I wore to church, the hair was actually flat - it's long enough to be flattened by what I wear on my head. It is not thick enough nor long enough to stop wearing hats, but it is enough that I don't get immediately cold when I take off my hat. It should be another couple months before I can officially be done with head coverings. I did try to wear mascara the other day. I keep saying that I haven't lost my eyelashes and eyebrows. The eyebrows are quite thin and really light (white?), so they are a little hard to see. When I put the mascara on, I noticed that on the upper lid, there are only about 10 lashes on each one, and when I tried to brush it on the bottom lid, there was nothing there - only about 1 or 2 lashes in the outer corner of each eye. I went and got some eye liner instead, so I can look less 'sickly'. I am also noticing that I am tearing more. Maybe that is because there are no lashes to keep in my tears, that my eyes are leaking instead of lubricating themselves.
Now I really have gone on long enough. I am ready for lunch - so I'd better go!
Monday, January 25, 2016
Thursday, January 7, 2016
Surgeon Appointment
Once again I am on my iPad, which does not give me much space to write. I am also in bed wanting to go to sleep. So here is a little bit of what I wrote in an email that sums up what the doctors visit was like today. Still waiting for my tastebuds to revitalize!
Surgery is normally scheduled 3-4 weeks after the last round of chemo. If it needs to be done longer than that, then I will have to have another round of chemo in between. The reason being that we don't want the cancer to get another foothold and start to grow more. The images she showed us from the original MRI and the other images and how she described them while showing us - there is more cancer than just the 2 lumps that make up one larger area. This mass is close to the muscle wall, so that is one reason they had to do the chemo therapy first - to shrink that all down small enough that they can be confident to get all the tissue and surrounding stuff.
So, surgery - and we decided on a right side mastectomy - will be sometime the week of January 25- probably Friday the 29th if they can schedule it then. It will be about a 6 week recovery from that where I am to do as little movement of the right arm as possible so that the skin can adhere to the new surface underneath. I will then have physical therapy and start radiation after that. There is a small 'area of concern' on the left side that didn't look to be of the same makeup as the other cancerous areas. She said it wasn't something to worry about enough to do a mastectomy on that side also.
I also will have lymph nodes removed - that is the physical therapy I will be doing afterwards - to prevent lymphadema (accumulation of fluid in the arm due to lymph nodes not there to do their job of draining the arm).
Forgot to add to the email that radiation will begin 6 weeks post op and go for 6 weeks. Also, the are of concern on the left side looked to be benign. That is why they aren't concerned about operating.
Tuesday, January 5, 2016
What will this New Year Bring?
Well, a year ago, we had made the decision to take a new job in Spokane and move from Kalispell where we had been for 51 weeks. There was lots of prayer and list making to decide to do this, but we knew at the top of our list was to be closer to family and close to a temple. Spokane had always been one place we had kept in mind for living. So here we are. That was not the only thing that last "New Year" had in store for us. Of course, a big one was that I was to find out that I have cancer.
Here we are at the end of last year and the beginning of this and I am through with the chemotherapy! I am so excited to be at this point. I am having a hard week, but not as hard as some of the others. My mouth thing is probably as bad as it's been. I can't tolerate anything in my mouth. Last night I had to concentrate on each bite - psyching myself into putting it into my mouth. I am making due. I am drinking enough and each day has been a little better.
Christmas break was really good. The day we left was essentially 2 days and 2 weeks after my last infusion. So by the time Christmas Eve rolled around, that would have been my 3 weeks/next infusion. But I got an extra week because of the holiday. We enjoyed good travel days coming and going to Salt Lake. Maggie's parents were in WA, so they graciously let us stay at their home so we didn't have to be crowded into an apartment and mix N with a dog full-time. N actually got really used to Korah and didn't have problems with her when they were together. I could tell that she was on high alert, so being in the same housing would have made her a little too stressed out. We enjoyed a lot of time with Carter and Maggie and Tori and Jesse. I wasn't up for any type of outings. I spent Christmas Eve morning at the outlet mall - the couple hours I was gone was not too much, but would have been if I went longer. We did some dinners out and I taught Tori how to make peanut brittle. When we went to get groceries, I tried to carry my grocery bags up the stairs from the road and the 1 1/2 flights up to their apartment. I had to give up half way up the inside stairs. The whole time, I kept busy and rested when I needed to. I didn't overdo anything.
December 30th was my last infusion. Stacy came with me again! It has been so good reconnecting with her as we sit there while the drugs are pumped into my body. Thursday and Friday were pretty good days. I rested a lot and tried to store up for the next couple of days. Saturday wasn't too bad (this has been my worst day). I was able to interact with the family and didn't have to spend the whole day sacked out on my bed. I even considered going to church on Sunday. The power went out in the morning, so they just held Sacrament meeting. I (wisely and with Jeff's advice) decided to stay home. Monday and today have been ok. I can't tell much difference in my mouth problem though, and that has been most frustrating.
One thing that I am having difficulty this time is fatigue. I have been tired the other times, but this time it is really bad. The doctor said that I am anemic, but not to the point that I will need a transfusion. I keep thinking that my out-of-breathness is due to being so inactive the last few months and I just need to get back into shape. That is not the case. The problem is anemia and so I just have to prioritize my activities and rest when I can. This is not something that I could have avoided or stored up for before. It is just the way it is now and I have to deal with it. I am assuming that I will be able to drive if I need to. I just get sooooo tired doing anything. A couple days ago, I had to sit down while brushing my teeth. I can barely make it up the stairs without taking a break (and that is not carrying anything). Today I made my bed then had to rest on it right away. I am not getting dizzy or falling over by any means. I assume if I do that would be when I would have to go in to get checked. I just need to take it slowly. I make the girls' lunch, then sit while they eat breakfast. I make my bed, then rest for a few minutes. I am getting really tired and bored with TV and the iPad. I have been watching a bunch of series of things and multiple movies. I need book suggestions. I love that I can get books on my iPad, but I need suggestions of what to read. I have so many books here at the house that I have never read, but most of them are intellectual rather than entertainment reading. I need entertainment books. I do have a list of projects that I want to get tp, but this week has not been the one to get into something that needs focus. I know this next week will get better. I just need to remember that each day is better and each week will be even more so. patience, patience.....
Once again, I appreciate and feel all the love and prayers sent my way. I keep hearing from family and friends how their children always remember to pray for me. We visited with the Whipple's while we were in SL and Edmund remembers me with every prayer. He was so cute. I got to get right up to him and have a talk about how much his prayers are helping me to get better. I took my hat off and showed him my bald head and his eyes got so huge and his jaw dropped - he couldn't figure out why I was bald. He thought it was really cool that I have some fuzzy hair coming in. That has been exciting. I know that it isn't really "coming in", but I do have a lot of single hairs coming in and lots of fuzz. I am assuming that by the end of this month is when it will get to be some serious hair growth.
Here we are at the end of last year and the beginning of this and I am through with the chemotherapy! I am so excited to be at this point. I am having a hard week, but not as hard as some of the others. My mouth thing is probably as bad as it's been. I can't tolerate anything in my mouth. Last night I had to concentrate on each bite - psyching myself into putting it into my mouth. I am making due. I am drinking enough and each day has been a little better.
Christmas break was really good. The day we left was essentially 2 days and 2 weeks after my last infusion. So by the time Christmas Eve rolled around, that would have been my 3 weeks/next infusion. But I got an extra week because of the holiday. We enjoyed good travel days coming and going to Salt Lake. Maggie's parents were in WA, so they graciously let us stay at their home so we didn't have to be crowded into an apartment and mix N with a dog full-time. N actually got really used to Korah and didn't have problems with her when they were together. I could tell that she was on high alert, so being in the same housing would have made her a little too stressed out. We enjoyed a lot of time with Carter and Maggie and Tori and Jesse. I wasn't up for any type of outings. I spent Christmas Eve morning at the outlet mall - the couple hours I was gone was not too much, but would have been if I went longer. We did some dinners out and I taught Tori how to make peanut brittle. When we went to get groceries, I tried to carry my grocery bags up the stairs from the road and the 1 1/2 flights up to their apartment. I had to give up half way up the inside stairs. The whole time, I kept busy and rested when I needed to. I didn't overdo anything.
December 30th was my last infusion. Stacy came with me again! It has been so good reconnecting with her as we sit there while the drugs are pumped into my body. Thursday and Friday were pretty good days. I rested a lot and tried to store up for the next couple of days. Saturday wasn't too bad (this has been my worst day). I was able to interact with the family and didn't have to spend the whole day sacked out on my bed. I even considered going to church on Sunday. The power went out in the morning, so they just held Sacrament meeting. I (wisely and with Jeff's advice) decided to stay home. Monday and today have been ok. I can't tell much difference in my mouth problem though, and that has been most frustrating.
One thing that I am having difficulty this time is fatigue. I have been tired the other times, but this time it is really bad. The doctor said that I am anemic, but not to the point that I will need a transfusion. I keep thinking that my out-of-breathness is due to being so inactive the last few months and I just need to get back into shape. That is not the case. The problem is anemia and so I just have to prioritize my activities and rest when I can. This is not something that I could have avoided or stored up for before. It is just the way it is now and I have to deal with it. I am assuming that I will be able to drive if I need to. I just get sooooo tired doing anything. A couple days ago, I had to sit down while brushing my teeth. I can barely make it up the stairs without taking a break (and that is not carrying anything). Today I made my bed then had to rest on it right away. I am not getting dizzy or falling over by any means. I assume if I do that would be when I would have to go in to get checked. I just need to take it slowly. I make the girls' lunch, then sit while they eat breakfast. I make my bed, then rest for a few minutes. I am getting really tired and bored with TV and the iPad. I have been watching a bunch of series of things and multiple movies. I need book suggestions. I love that I can get books on my iPad, but I need suggestions of what to read. I have so many books here at the house that I have never read, but most of them are intellectual rather than entertainment reading. I need entertainment books. I do have a list of projects that I want to get tp, but this week has not been the one to get into something that needs focus. I know this next week will get better. I just need to remember that each day is better and each week will be even more so. patience, patience.....
Once again, I appreciate and feel all the love and prayers sent my way. I keep hearing from family and friends how their children always remember to pray for me. We visited with the Whipple's while we were in SL and Edmund remembers me with every prayer. He was so cute. I got to get right up to him and have a talk about how much his prayers are helping me to get better. I took my hat off and showed him my bald head and his eyes got so huge and his jaw dropped - he couldn't figure out why I was bald. He thought it was really cool that I have some fuzzy hair coming in. That has been exciting. I know that it isn't really "coming in", but I do have a lot of single hairs coming in and lots of fuzz. I am assuming that by the end of this month is when it will get to be some serious hair growth.
Wednesday, December 23, 2015
A White Christmas
To update, this round was better than the worst 2. My mouth went wacko this time - I really could not tolerate much in the way of food. I spent one day sipping every few minutes from a water bottle. It was so dry and cottony. I described it to others like this - think of burning your tongue on a hot drink. Now, imagine that feeling that you get on your tongue your whole tongue and roof and inside of the whole mouth. It lasted for a lot longer than other times. Physically I bounced back pretty well this time. I never went as down deep as #1 and #4.
We came to Salt Lake for Christmas. Carter, Tori and Jesse all couldn't take time off from work. Maggie could have if it would have been something they could have done to come up to WA for Christmas. But we decided to come ahead on down here - it all depended on last minute how I felt and how the weather was for driving. Both were favorable, so south we came. We did hit a couple of blizzardy spots on the drive through Montana, but most of the drive the roads were either just wet or bare and dry.
Maggie's parents went to Issaquah for Christmas, and they were kind enough to let us stay in their house in Lehi. This way we have more room than if we stayed with C&M, and N is not having to be on high alert with a dog in the house all the time. She has warmed up to Korah, and pets her and follows her around now, but she still is on edge not sure what K will do.
Since we got here, we have gotten a few inches of snow. This morning it was blowing so hard at the same time that it was snowing sideways. We got in at dinner time on Saturday. We met everyone at an Italian restaurant in Taylorsville. Carter couldn't make it as he had a call to go to in Layton to fix a client's computer system that had gotten a really bad virus. Sunday we went to C&M's ward then went to Jeff's sister Jan's house for a Howell family get together. Valerie was there visiting her son Jason and family (they came too). Mike and his family, all of our family, Mom came with Mike and Mom's brother in law Garth Porter and his daughter Mary were there. It was so fun to see and spend time with everyone there.
Monday the girls played with Korah in the snow. Maggie and I went shopping. Then Carter and I went to see the new Star Wars movie! I wasn't up for going out to dinner - it had been too long of a day. We went to Costco and got pizza then went home for that and games. Yesterday, Tuesday, we hung out with Maggie. Jeff went to get some tubes to go tubing, but took a long time as the first place he went didn't have any and it was crowded shopping. They all left the same time I did. I went downtown to Tori's house to help her make peanut brittle and have dinner. That was fun spending time teaching her Grandfather's technique to make the best peanut brittle! It was snowing when I left, but not really sticking on the ground. I got back to C&M's and we all came down here to Lehi. It was another long day. My stamina isn't great, but I am able to do most things. I had a hard time carrying a bag of groceries up a flight of stairs - Tori had to take it from me the last couple of steps.
So far, we are all healthy. N just came in from playing outside complaining she was going to throw up, but didn't. I think she just got overheated - so they rested a bit and are out again.We are going to go up to Riverton and maybe see a movie (everyone is working today). Carter and I will go out to dinner, since I had to back out on it on Monday. I did miss dinner out with Brenton and his family last night, but I really wanted to spend the time with Tori, and this was the only time we had, mostly so she could take the candy into work with her, but it really was the only night we could have done that. Tomorrow, everyone is going to stay here for the night, then we'll have Christmas to relax and play games and visit some more! I am loving the time with all my children together. I am getting tired obviously, but I am resting and not doing anything that is taxing to my energy.
One week from today I will be sitting in the chemo room for the last time for infusions! 2 weeks from today I should be out of all the icky stuff and feeling better and getting on the mend again but for the last time!
We came to Salt Lake for Christmas. Carter, Tori and Jesse all couldn't take time off from work. Maggie could have if it would have been something they could have done to come up to WA for Christmas. But we decided to come ahead on down here - it all depended on last minute how I felt and how the weather was for driving. Both were favorable, so south we came. We did hit a couple of blizzardy spots on the drive through Montana, but most of the drive the roads were either just wet or bare and dry.
Maggie's parents went to Issaquah for Christmas, and they were kind enough to let us stay in their house in Lehi. This way we have more room than if we stayed with C&M, and N is not having to be on high alert with a dog in the house all the time. She has warmed up to Korah, and pets her and follows her around now, but she still is on edge not sure what K will do.
Since we got here, we have gotten a few inches of snow. This morning it was blowing so hard at the same time that it was snowing sideways. We got in at dinner time on Saturday. We met everyone at an Italian restaurant in Taylorsville. Carter couldn't make it as he had a call to go to in Layton to fix a client's computer system that had gotten a really bad virus. Sunday we went to C&M's ward then went to Jeff's sister Jan's house for a Howell family get together. Valerie was there visiting her son Jason and family (they came too). Mike and his family, all of our family, Mom came with Mike and Mom's brother in law Garth Porter and his daughter Mary were there. It was so fun to see and spend time with everyone there.
Monday the girls played with Korah in the snow. Maggie and I went shopping. Then Carter and I went to see the new Star Wars movie! I wasn't up for going out to dinner - it had been too long of a day. We went to Costco and got pizza then went home for that and games. Yesterday, Tuesday, we hung out with Maggie. Jeff went to get some tubes to go tubing, but took a long time as the first place he went didn't have any and it was crowded shopping. They all left the same time I did. I went downtown to Tori's house to help her make peanut brittle and have dinner. That was fun spending time teaching her Grandfather's technique to make the best peanut brittle! It was snowing when I left, but not really sticking on the ground. I got back to C&M's and we all came down here to Lehi. It was another long day. My stamina isn't great, but I am able to do most things. I had a hard time carrying a bag of groceries up a flight of stairs - Tori had to take it from me the last couple of steps.
So far, we are all healthy. N just came in from playing outside complaining she was going to throw up, but didn't. I think she just got overheated - so they rested a bit and are out again.We are going to go up to Riverton and maybe see a movie (everyone is working today). Carter and I will go out to dinner, since I had to back out on it on Monday. I did miss dinner out with Brenton and his family last night, but I really wanted to spend the time with Tori, and this was the only time we had, mostly so she could take the candy into work with her, but it really was the only night we could have done that. Tomorrow, everyone is going to stay here for the night, then we'll have Christmas to relax and play games and visit some more! I am loving the time with all my children together. I am getting tired obviously, but I am resting and not doing anything that is taxing to my energy.
One week from today I will be sitting in the chemo room for the last time for infusions! 2 weeks from today I should be out of all the icky stuff and feeling better and getting on the mend again but for the last time!
Friday, December 4, 2015
5 Down 1 To Go!!
Although I am not through this round, yet, I can happily say I have gotten 5 of my 6 infusions over and done with. From the last round, I am not looking forward to the next few days in terms of how I will feel. I had one round that wasn't too bad, and that was round 2. I expected then to just hit the wall like I did with the 1st one, but I didn't. The 3rd round was almost as bad as the first, and #4 I had a couple of really bad days where I just couldn't stand going through. I am not looking forward to having that happen again. I made sure to tell Dr. Sri how much I didn't like it, and to point out all the side effects that I have had this time. One of them is that my fingernails started hurting really badly. I had the middle, ring and pinky fingers on both hands get this red spot in the middle of the nail. It would hurt to pull on my socks - that grabbing and pulling motion. I just now took the picture and the redness has gone down quite a bit and the soreness is not really noticeable. I just hope that I don't loose my nail. The left middle finger was the worst. It was so bright red, that I kept thinking I had gotten a spot of paint or nail polish on it.
The soles of my feet also get really tired-sore if I walk or stand too much. The day before Thanksgiving when I was in the kitchen most of the day I really only did too much in regards to my feet. But the next couple of days with just sitting down mostly helped that to go away. I mentioned before my question as to am I getting more tired because I am not exercising, or would that get worse if I did some type of exercise? Well Dr. Sri did say that my red blood count is bordering on anemia, not enough to get a transfusion, but enough to feel the side effect of fatigue. So this time is one where energy will not beget energy. I feel like I should keep up my stamina, but at the same time, I don't want to overdo it. My heart is faring well according to the echocardiogram. The ultrasound showed that both lumps have shrunk by half which the doctor was really pleased with after 4 rounds of chemo. So all in all, this is great news here.
I also have not lost my eyebrows or eyelashes, which is nice to not have to deal with. I have a few (very few) hairs growing back on my head. A couple of the strands are even almost an inch long. Weird that hair will fall out, and then not grow, but some of the strands will actually grow. I guess I am getting ready to be done with this whole thing. I was told that surgery can happen as early as 3 weeks after my last round. I will be meeting with Dr. Moline sometime this month to discuss what will happen. I made it clear to Dr. Sri that grandbaby #1 comes the middle of February and I want to be healed and well enough to travel and be there for that.
Well, here's to a good next couple of days! It feels weird to have the infusion, feel good for a couple of days and just sit here waiting for the inevitable hit the wall time. I wish I could run around that wall really quickly, but since I can't walk up the stairs without getting winded, I guess I am not up to running around any walls. I am determined to rest, rest, rest so I will be up for travelling for Christmas to Utah in 2 weeks!
The soles of my feet also get really tired-sore if I walk or stand too much. The day before Thanksgiving when I was in the kitchen most of the day I really only did too much in regards to my feet. But the next couple of days with just sitting down mostly helped that to go away. I mentioned before my question as to am I getting more tired because I am not exercising, or would that get worse if I did some type of exercise? Well Dr. Sri did say that my red blood count is bordering on anemia, not enough to get a transfusion, but enough to feel the side effect of fatigue. So this time is one where energy will not beget energy. I feel like I should keep up my stamina, but at the same time, I don't want to overdo it. My heart is faring well according to the echocardiogram. The ultrasound showed that both lumps have shrunk by half which the doctor was really pleased with after 4 rounds of chemo. So all in all, this is great news here.
I also have not lost my eyebrows or eyelashes, which is nice to not have to deal with. I have a few (very few) hairs growing back on my head. A couple of the strands are even almost an inch long. Weird that hair will fall out, and then not grow, but some of the strands will actually grow. I guess I am getting ready to be done with this whole thing. I was told that surgery can happen as early as 3 weeks after my last round. I will be meeting with Dr. Moline sometime this month to discuss what will happen. I made it clear to Dr. Sri that grandbaby #1 comes the middle of February and I want to be healed and well enough to travel and be there for that.
Well, here's to a good next couple of days! It feels weird to have the infusion, feel good for a couple of days and just sit here waiting for the inevitable hit the wall time. I wish I could run around that wall really quickly, but since I can't walk up the stairs without getting winded, I guess I am not up to running around any walls. I am determined to rest, rest, rest so I will be up for travelling for Christmas to Utah in 2 weeks!
Tuesday, December 1, 2015
A Time of Thanks!
Well, it seems like it's been a long time since I have written, and then I realize that it has been. Mostly because I got to have a 4 week break between treatments this time. Also, my time has been full when I have been able to do stuff.
This last round really did it to me. I had a really bad day on the Sunday following the infusion. I took a while coming back from that. I guess I did write about that already. I have been more tired this time. Before I've had a week where I can't and don't do anything. Then about a few days of taking it easy and then a week and a half of pretty much doing normal things. This time I probably had a week and a half of not doing anything. Then a full week of just getting tired everytime I did any kind of activity. Before I was able to ride bikes to school for the 2 weeks before my next treatment. This time there is no way I could have done that. I have been getting a little short of breath just climbing the stairs. Not huffing and puffing, but dragging my feet the last couple of steps. I don't go downstairs very often, so it's not like that is happening all the time. But then again, I don't go downstairs, so I am not used to that activity. I don't know if I should be doing any kind of exercise. The bike riding (1/2 mile each way which took me maybe 10 minutes) was perfect and I felt good afterwards. Since the weather changed, the girls haven't been riding so I am not and so I am not getting any exercise what so ever! If you know me, I hate exercise in any form, so I guess I should be happy I am not doing it. But at the same time I want my heart to be healthy and to be able to climb the stairs and other normal activities. I will have to ask the doctor about that. When I can start again in January, I will be so rock bottom when it comes to fitness I will have to start from scratch.
Good news!! I had an echocardiogram yesterday to check how my heart is holding up as some of the drugs can do damage to the heart. I will hear about that test on Thursday from Dr. Sri. But today I had an ultrasound to check the size of the lumps and the radiologist said "they have significantly decreased in size"! I am really happy about that.
Back to how I have been feeling. So last week I was more tired than I have been on my 3rd week before. I was realizing how nice it was to have an extra week because I would be starting out this round no up to par. I am, yesterday and today, feeling much more normal. I have done things around the house and even decorated for Christmas. I don't have a lot of decorations, so it doesn't take me much time to do that. I do have a new house, so things don't have an automatic place to go. I got it all finished today and the storage boxes are put away and it looks festive around here. Tomorrow I will be able to finish a few things that need doing before me being out a week. By the time I start feeling normal again, it will be just a week before Christmas. I am going to have to turn over a lot of the gift portion of Christmas to Jeff. He actually does most of the stuff normally, so that shouldn't be too hard on him. He is a last minute shopper, though, so I will have to get on him to get some things done so we can get what needs getting in the mail on time.
I have been thinking that if I had kept on my 3 week schedule, then my 5th treatment would have been a week ago and I would be starting to feel better right now. But I can't dwell on that too much. I can say that in a week I will have been through the worst part of number 5 and will only have one more to go!!! I am so ready to be done. I am not looking forward to this - not that I have looked forward to any of them at all. I just have those couple of days that I am dreading. I shouldn't end on that note. I guess I can say that I still feel the prayers that are being offered on my behalf. I do know that my Savior Jesus Christ has been sustaining me through this ordeal. I have not understood the Atonement very much in my life, and I can't say that I really understand it all that much still. But I can say that I know that it is real. Jesus Christ did a lot more than teach us the way to live and love. He paid for our sins. But he did a lot more than that. He took upon Him ALL of our infirmities, not just our sins. All that we suffer, He has suffered. He did this and so He can understand and sustain and support us through anything that we go through. This knowledge and understanding has been the only thing that has gotten me through some hard hours. And being on the other side of this is so good that I don't want to go back into it again, but I will and I know that I will come out on the other side with even more understanding and strength.
This last round really did it to me. I had a really bad day on the Sunday following the infusion. I took a while coming back from that. I guess I did write about that already. I have been more tired this time. Before I've had a week where I can't and don't do anything. Then about a few days of taking it easy and then a week and a half of pretty much doing normal things. This time I probably had a week and a half of not doing anything. Then a full week of just getting tired everytime I did any kind of activity. Before I was able to ride bikes to school for the 2 weeks before my next treatment. This time there is no way I could have done that. I have been getting a little short of breath just climbing the stairs. Not huffing and puffing, but dragging my feet the last couple of steps. I don't go downstairs very often, so it's not like that is happening all the time. But then again, I don't go downstairs, so I am not used to that activity. I don't know if I should be doing any kind of exercise. The bike riding (1/2 mile each way which took me maybe 10 minutes) was perfect and I felt good afterwards. Since the weather changed, the girls haven't been riding so I am not and so I am not getting any exercise what so ever! If you know me, I hate exercise in any form, so I guess I should be happy I am not doing it. But at the same time I want my heart to be healthy and to be able to climb the stairs and other normal activities. I will have to ask the doctor about that. When I can start again in January, I will be so rock bottom when it comes to fitness I will have to start from scratch.
Good news!! I had an echocardiogram yesterday to check how my heart is holding up as some of the drugs can do damage to the heart. I will hear about that test on Thursday from Dr. Sri. But today I had an ultrasound to check the size of the lumps and the radiologist said "they have significantly decreased in size"! I am really happy about that.
Back to how I have been feeling. So last week I was more tired than I have been on my 3rd week before. I was realizing how nice it was to have an extra week because I would be starting out this round no up to par. I am, yesterday and today, feeling much more normal. I have done things around the house and even decorated for Christmas. I don't have a lot of decorations, so it doesn't take me much time to do that. I do have a new house, so things don't have an automatic place to go. I got it all finished today and the storage boxes are put away and it looks festive around here. Tomorrow I will be able to finish a few things that need doing before me being out a week. By the time I start feeling normal again, it will be just a week before Christmas. I am going to have to turn over a lot of the gift portion of Christmas to Jeff. He actually does most of the stuff normally, so that shouldn't be too hard on him. He is a last minute shopper, though, so I will have to get on him to get some things done so we can get what needs getting in the mail on time.
I have been thinking that if I had kept on my 3 week schedule, then my 5th treatment would have been a week ago and I would be starting to feel better right now. But I can't dwell on that too much. I can say that in a week I will have been through the worst part of number 5 and will only have one more to go!!! I am so ready to be done. I am not looking forward to this - not that I have looked forward to any of them at all. I just have those couple of days that I am dreading. I shouldn't end on that note. I guess I can say that I still feel the prayers that are being offered on my behalf. I do know that my Savior Jesus Christ has been sustaining me through this ordeal. I have not understood the Atonement very much in my life, and I can't say that I really understand it all that much still. But I can say that I know that it is real. Jesus Christ did a lot more than teach us the way to live and love. He paid for our sins. But he did a lot more than that. He took upon Him ALL of our infirmities, not just our sins. All that we suffer, He has suffered. He did this and so He can understand and sustain and support us through anything that we go through. This knowledge and understanding has been the only thing that has gotten me through some hard hours. And being on the other side of this is so good that I don't want to go back into it again, but I will and I know that I will come out on the other side with even more understanding and strength.
Thursday, November 19, 2015
The Calm After the Storm
Every day is a new day. That is what I have to go by through this whole ordeal. Just one day at a time - or one minute at a time, which I had to do on the Sunday and part of the Monday following this last treatment. I feel more energy every day. I have less energy than after the other treatments, so I can't expect to follow exactly the same pattern. In fact, I was told that one makes a pattern and follows it pretty closely each time. That has not been the same for me. I guess I can see a little bit of one, I just expected to feel the same, too. But the intensity of the crummies has been varied; from not being able to get out of bed, to being able to wander from living to bed-room. But I can see that I feel pretty good on treatment day and the following day. I start going down hill day 3, day 4 is the worst and I progressively get better from there, at a different pace, but it does go uphill after day 4 and 5. My taste is totally off for a good week. I have a hard time eating as absolutely nothing tastes good. My mouth is dry and filmy. I do notice that when I sleep better, the next day is much better. I am using the zolpidem that the doctor gave me for the first 4-5 nights, then Tylenol pm if I still need more nights of sleep. That has made a big difference. My worst days have been when I go to bed and think "I am tired enough to sleep" and then I have a terrible, wakeful night.
I feel almost normal today - well, normal for what I have these days. I can do most things around the house, I do have to rest more and I get out of breath going up the stairs - not huffing and puffing, but a little bit out of breath. My taste is back to where I can eat most things without gagging and it actually gives me a little pleasure. I am so happy about this as I can look forward to enjoying Thanksgiving dinner. And looking ahead to Christmas, I will be able to enjoy the week or so before that, too.
We are just getting out of the throes of a big wind storm that hit Eastern Washington on Tuesday evening. I don't know what the highest wind speed was, but it was extremely gusty and sustained high winds. Everyone around here keeps referring to the 1996 ice storm that did a bunch of damage, and this one is considered to have done much more. The power went out Tuesday afternoon right before 3:00 and we got ours back last night (Wednesday) at 6:00. Some in the area are estimated to have to go another couple days without. Tuesday night we had scheduled to have the Sister Missionaries over for dinner. Tuesday is Taco night around here, so I had taken some chicken out to thaw for dinner. I was doing some sewing - cutting a bunch of projects out and had just sewn some trim on a bed skirt for N's bed. I finished, put a pan on to cook the chicken, moved the car out of the garage (in preparation to get to piano lessons). 3 minutes after I stopped sewing, the power went off. I figured we could cook the chicken on the bbq. Jeff called me on the way to piano, and had stopped for something and his battery died. I dropped off the girls and went to jump start his car. We were both headed home to get ready for dinner then I would go get the girls (stopping at the store first). We came to a spot where the highway was closed from a power line across it. He went one way, and I went the other to get to another store and the girls. We passed about 5 downed trees on the back roads to and from piano, praying that nothing would actually come down on top of us. Jeff had to keep re-lighting the bbq as the wind kept blowing it out. It took almost an hour to cook 2 pieces of chicken. We got a new sister, and it was her first night here. It was really fun eating by candlelight and having soft tacos. The poor sisters live in a basement apartment of a farm house that runs off a well, so they don't even have water. (they came the next morning to shower).
Wednesday school was cancelled, and the girls and I just hung out at home. I didn't do much, but read and be with them. We decided to go out to dinner instead of cooking eggs on the burner on the bbq. The power came back on 10 minutes before we left, but we decided to go out anyway. It was the same plan as most of the residents of North Spokane. It was like a weekend night at the height of the dinner hour. 30+ minutes wait at Olive Garden. We opted for Azteca next door as they told us we would have a 15 minute wait. There were only 3 other people in front of us. Well, we ended up getting to know another family who came in after us. We were still waiting after 30 minutes. The party right before us had just gotten seated and guess what???.... The power went out! By then, there were about 10 or more other families waiting, and they all left. We were told to wait about 10 minutes and they would have to close if the power didn't come on by then. We all cheered a party of utility workers who were leaving from their dinner break.Well, we took off to find another place to eat. We went to another part of town which still had power. We started to go into Taco Time, but their door was closed and locked even though there were workers in there. Come to find out later the drive-thru was open. We decided to go to a place next door which is more of a local mexican restaurant place. We placed our order and were waiting for it when this same family we had befriended at Azteca walks in! That was a fun coincidence. The food was really, really good and plenty of it! I think Azteca lost customers in us last night! We came home to a warm house, and the ability to see what we were doing. I actually really like it when the power goes out. We have a big box full of old candles.. We had them all over the living room and kitchen. We have a gas fireplace which keeps the living area comfortable. We have food to eat that doesn't require cooking. We played games and the girls built a fort in the living room. Today, there is still no school as a lot of the district is still without power. They are doing chores and playing in the fort and doing some fun stuff. I just did my 'chores' and I am going to do some cross stitch and sewing.
My next treatment - if kept on the 3 week schedule - would be on Thanksgiving day. It is scheduled a week later on December 3rd - my Mother-in-law's and a couple of nephew's birthday. It will be nice to have 2 full weeks of feeling really good this time.
I feel almost normal today - well, normal for what I have these days. I can do most things around the house, I do have to rest more and I get out of breath going up the stairs - not huffing and puffing, but a little bit out of breath. My taste is back to where I can eat most things without gagging and it actually gives me a little pleasure. I am so happy about this as I can look forward to enjoying Thanksgiving dinner. And looking ahead to Christmas, I will be able to enjoy the week or so before that, too.
We are just getting out of the throes of a big wind storm that hit Eastern Washington on Tuesday evening. I don't know what the highest wind speed was, but it was extremely gusty and sustained high winds. Everyone around here keeps referring to the 1996 ice storm that did a bunch of damage, and this one is considered to have done much more. The power went out Tuesday afternoon right before 3:00 and we got ours back last night (Wednesday) at 6:00. Some in the area are estimated to have to go another couple days without. Tuesday night we had scheduled to have the Sister Missionaries over for dinner. Tuesday is Taco night around here, so I had taken some chicken out to thaw for dinner. I was doing some sewing - cutting a bunch of projects out and had just sewn some trim on a bed skirt for N's bed. I finished, put a pan on to cook the chicken, moved the car out of the garage (in preparation to get to piano lessons). 3 minutes after I stopped sewing, the power went off. I figured we could cook the chicken on the bbq. Jeff called me on the way to piano, and had stopped for something and his battery died. I dropped off the girls and went to jump start his car. We were both headed home to get ready for dinner then I would go get the girls (stopping at the store first). We came to a spot where the highway was closed from a power line across it. He went one way, and I went the other to get to another store and the girls. We passed about 5 downed trees on the back roads to and from piano, praying that nothing would actually come down on top of us. Jeff had to keep re-lighting the bbq as the wind kept blowing it out. It took almost an hour to cook 2 pieces of chicken. We got a new sister, and it was her first night here. It was really fun eating by candlelight and having soft tacos. The poor sisters live in a basement apartment of a farm house that runs off a well, so they don't even have water. (they came the next morning to shower).
Wednesday school was cancelled, and the girls and I just hung out at home. I didn't do much, but read and be with them. We decided to go out to dinner instead of cooking eggs on the burner on the bbq. The power came back on 10 minutes before we left, but we decided to go out anyway. It was the same plan as most of the residents of North Spokane. It was like a weekend night at the height of the dinner hour. 30+ minutes wait at Olive Garden. We opted for Azteca next door as they told us we would have a 15 minute wait. There were only 3 other people in front of us. Well, we ended up getting to know another family who came in after us. We were still waiting after 30 minutes. The party right before us had just gotten seated and guess what???.... The power went out! By then, there were about 10 or more other families waiting, and they all left. We were told to wait about 10 minutes and they would have to close if the power didn't come on by then. We all cheered a party of utility workers who were leaving from their dinner break.Well, we took off to find another place to eat. We went to another part of town which still had power. We started to go into Taco Time, but their door was closed and locked even though there were workers in there. Come to find out later the drive-thru was open. We decided to go to a place next door which is more of a local mexican restaurant place. We placed our order and were waiting for it when this same family we had befriended at Azteca walks in! That was a fun coincidence. The food was really, really good and plenty of it! I think Azteca lost customers in us last night! We came home to a warm house, and the ability to see what we were doing. I actually really like it when the power goes out. We have a big box full of old candles.. We had them all over the living room and kitchen. We have a gas fireplace which keeps the living area comfortable. We have food to eat that doesn't require cooking. We played games and the girls built a fort in the living room. Today, there is still no school as a lot of the district is still without power. They are doing chores and playing in the fort and doing some fun stuff. I just did my 'chores' and I am going to do some cross stitch and sewing.
My next treatment - if kept on the 3 week schedule - would be on Thanksgiving day. It is scheduled a week later on December 3rd - my Mother-in-law's and a couple of nephew's birthday. It will be nice to have 2 full weeks of feeling really good this time.
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