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.
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