Thursday March 28th
Today started out to be a hard day. Ryan is still under the weather and I’m pretty much quarantined from him now. He has had a slight fever every 12 hours or so for the past 2 days, which isn’t too bad but I definitely have to be careful now. So when he’s home and sees me and screams mama and I can’t pick him up and help him- that’s a tough one. When he’s home I have to try to stay out of sight so he doesn’t get all worked up from me not being able to go near him or hold him. Thank goodness Jason and Matthew are so good.
Thursdays are the days I love to spend with Ryan because I feel good enough to, thanks to my wonderful steroids I get before and during my infusion on Wednesdays. But yesterday I couldn’t see him, last night I couldn’t handle him and today I couldn’t be near him. And I couldn’t even let him see me. So I stayed in the bedroom and then in the playroom until he was picked up for the day by my in-laws. I know it’s for the best. And I know he’s fine. It’s just hard that I can’t take care of my baby and harder when he comes home and I can’t be in his sight.
Tomorrow he will spend the day with my mom so I can rest. Saturday he will spend the day again with my in-laws. Sunday hopefully he’ll be ok and I’ll be able to handle him again but if not, Jason will be here and then my parents are coming back. I’m so thankful to have the help that I have. I couldn’t do this all without them. And thankful to have the friends that I have to help get me out of the house when I need it the most. It’s hard not being able to see your baby for days.
Positives for the day- without a baby here on a feel good day I made phone calls and more appointments I’ve been meaning to make, caught up on my morning tv shows, went to lunch and a walk in the park with a friend, got an iced coffee, drove with my sunroof open, went to Target and got stuff I needed, and received an awesome care package from my wonderful 3rd grade teaching teammates.
Now I’ll rest and enjoy what I can for the remainder of the evening, before I go into my cave for the next 3 days. If I can’t take care of Ryan tonight or be in his sight, at least I’ll get to sit with my feet up for a few hours..... and maybe I’ll actually get a few snuggles from Matthew...💪🏻💗🙏
Thursday, March 28, 2019
Tuesday, March 26, 2019
Tuesday March 26th
It’s been quite awhile since I’ve written anything. Partly because chemo brain is for real so most of the time I can’t even think of how to put anything into words anymore and partly because sometimes my fingers don’t work quite the way I want them too so typing things out can be a chore just the same as actual pen to paper. Or I’ll get something in my head, it makes perfect sense, but then I go to write or type and it just disappears. And then I just don’t have the patience to even try and remember or try to put whatever it is into sense anymore and I move on.
It’s 3pm on Tuesday March 26th, I actually had to check the date because most of the time I have no idea what date it is. I know the days of the week because everything is pretty routine these days. I’m on the 2nd phase of my chemo treatments so I go weekly now. Wednesdays I get my infusion, Thursdays I feel very ok because of the steroids I’m given pre treatment and during my treatment, and then Fridays I crash. Fridays and Saturdays I pretty much sleep all day. Sunday morning I’m still exhausted, but by the later afternoon I’m starting to come back. By Monday I’m ok again, Tuesday I’m fine. Then we start all over again Wednesday. And with the exhaustion comes other issues- bone pain in my back, tingling in the tips of my fingers, a chemo rash that appears in different spots, peeling skin on my hands, loss of appetite at times and a host of other ailments I’ll spare you the details of. And on top of all of this I have to try and stay healthy. Which this week I did not. It’s hard. I’m a mom and I have kids to attend to and even though Jason is absolutely taking over everything, there are times when my kids still want their mommy. Matthew is ok when I say I’m sorry I have to try to stay away because mommy has to be careful not to catch germs, but my almost 11 month old surely doesn’t get that. So last night when Ryan screamed and screamed because something was bothering him and he started sounding stuffy and wouldn’t let Jason soothe him, I know I have to be careful, and I was, but who steps in? Mommy, of course. And sure thing, he immediately calmed down. Barrier of blankets on my shoulder and against my face, not once putting my face in his. Once I got him to sleep I jumped into a hot shower and tried to disinfect myself as much as I could. But now I’m more susceptible to germs and I knew what was probably coming once I took him. So I woke up a little yucky and I have a treatment tomorrow. But it’s ok. I called my wonderful team of doctors and was told what to take, what to do, not to worry because being a mommy is still part of my life and I have to do what I have to do at times and and as long as my numbers are good and I’m feeling ok I go ahead with my treatment. Thankfully. I don’t want to skip a week if I don’t have to. So I sit here with Ryan napping on me because I was told it’s ok, and after today Thursday will most likely be the only day before Monday comes that I’ll feel ok enough to spend time with him.
Going through this all is hard. It’s hard for anyone, at any stage of this, at any age. And everyone going through this will have their own ways to get through it all. Mine is always to focus on the positives, which in itself is a tough thing to do. My husband, my beautiful boys, my family, the friends I have, my team of doctors. I focus on the positives because even though I’m going through what I’m going through, things could always be worse and I’m so thankful for me that they aren’t. I thank everything I’ve got that there’s a light at the end of the tunnel for me. And even though I have hell to go through each week, there’s so much good I do have in my life that it’s enough to get me through. Sure I have bad days. Bad moments. When the hell seems like it’s never ending. But it ends- and the 2 or 3 good days I do have, I soak up every moment.
The hardest thing for me is I do have what’s called anticipatory anxiety. Because I know what’s coming. Even though I know I get through it, just the thought of what is going to happen is enough to set me off. And to be honest I felt guilty for feeling angry or feeling awful because there are others out there that have it so much worse. Through my team of doctors I learned that even though there are people out there who have it so much worse, it can’t negate the way I feel and I’m allowed to feel awful or angry at times. I just have to focus on the positives and that’s what I do.
And hearing from all of you, whether it’s a comment on a post, words of encouragement through a text or private message, a meal sent, or just knowing that you are keeping me in your thoughts just helps to make it all that much better for me.
There’s much more ahead for me, but I will get through this. I just have to take everything day by day at this point. Moment by moment if I have to on my off days.
On a good note, Ryan is officially walking today! I’ll post a video I took of him earlier this afternoon. It’s crazy how life is- I’m actually getting to see all of his firsts.
Treatment #3 out of 12 tomorrow. After tomorrow 9 more left. 💗💪🏻🙏
It’s been quite awhile since I’ve written anything. Partly because chemo brain is for real so most of the time I can’t even think of how to put anything into words anymore and partly because sometimes my fingers don’t work quite the way I want them too so typing things out can be a chore just the same as actual pen to paper. Or I’ll get something in my head, it makes perfect sense, but then I go to write or type and it just disappears. And then I just don’t have the patience to even try and remember or try to put whatever it is into sense anymore and I move on.
It’s 3pm on Tuesday March 26th, I actually had to check the date because most of the time I have no idea what date it is. I know the days of the week because everything is pretty routine these days. I’m on the 2nd phase of my chemo treatments so I go weekly now. Wednesdays I get my infusion, Thursdays I feel very ok because of the steroids I’m given pre treatment and during my treatment, and then Fridays I crash. Fridays and Saturdays I pretty much sleep all day. Sunday morning I’m still exhausted, but by the later afternoon I’m starting to come back. By Monday I’m ok again, Tuesday I’m fine. Then we start all over again Wednesday. And with the exhaustion comes other issues- bone pain in my back, tingling in the tips of my fingers, a chemo rash that appears in different spots, peeling skin on my hands, loss of appetite at times and a host of other ailments I’ll spare you the details of. And on top of all of this I have to try and stay healthy. Which this week I did not. It’s hard. I’m a mom and I have kids to attend to and even though Jason is absolutely taking over everything, there are times when my kids still want their mommy. Matthew is ok when I say I’m sorry I have to try to stay away because mommy has to be careful not to catch germs, but my almost 11 month old surely doesn’t get that. So last night when Ryan screamed and screamed because something was bothering him and he started sounding stuffy and wouldn’t let Jason soothe him, I know I have to be careful, and I was, but who steps in? Mommy, of course. And sure thing, he immediately calmed down. Barrier of blankets on my shoulder and against my face, not once putting my face in his. Once I got him to sleep I jumped into a hot shower and tried to disinfect myself as much as I could. But now I’m more susceptible to germs and I knew what was probably coming once I took him. So I woke up a little yucky and I have a treatment tomorrow. But it’s ok. I called my wonderful team of doctors and was told what to take, what to do, not to worry because being a mommy is still part of my life and I have to do what I have to do at times and and as long as my numbers are good and I’m feeling ok I go ahead with my treatment. Thankfully. I don’t want to skip a week if I don’t have to. So I sit here with Ryan napping on me because I was told it’s ok, and after today Thursday will most likely be the only day before Monday comes that I’ll feel ok enough to spend time with him.
Going through this all is hard. It’s hard for anyone, at any stage of this, at any age. And everyone going through this will have their own ways to get through it all. Mine is always to focus on the positives, which in itself is a tough thing to do. My husband, my beautiful boys, my family, the friends I have, my team of doctors. I focus on the positives because even though I’m going through what I’m going through, things could always be worse and I’m so thankful for me that they aren’t. I thank everything I’ve got that there’s a light at the end of the tunnel for me. And even though I have hell to go through each week, there’s so much good I do have in my life that it’s enough to get me through. Sure I have bad days. Bad moments. When the hell seems like it’s never ending. But it ends- and the 2 or 3 good days I do have, I soak up every moment.
The hardest thing for me is I do have what’s called anticipatory anxiety. Because I know what’s coming. Even though I know I get through it, just the thought of what is going to happen is enough to set me off. And to be honest I felt guilty for feeling angry or feeling awful because there are others out there that have it so much worse. Through my team of doctors I learned that even though there are people out there who have it so much worse, it can’t negate the way I feel and I’m allowed to feel awful or angry at times. I just have to focus on the positives and that’s what I do.
And hearing from all of you, whether it’s a comment on a post, words of encouragement through a text or private message, a meal sent, or just knowing that you are keeping me in your thoughts just helps to make it all that much better for me.
There’s much more ahead for me, but I will get through this. I just have to take everything day by day at this point. Moment by moment if I have to on my off days.
On a good note, Ryan is officially walking today! I’ll post a video I took of him earlier this afternoon. It’s crazy how life is- I’m actually getting to see all of his firsts.
Treatment #3 out of 12 tomorrow. After tomorrow 9 more left. 💗💪🏻🙏
Wednesday, March 6, 2019
Tuesday March 5th (yesterday)
It’s only 6:30am Tuesday morning. I’m just lying in my bed and I’ve never been so grateful because I can already tell that I’m starting to feel like me again. Thank goodness I can feel me. Not medicated me, not groggy me, not I can’t function me, but me. I’m back. And I Iay here not ashamed to say I’m crying tears of joy this morning because it’s never felt so good to feel like me. Calm me. The past few days were agonizing, as I couldn’t feel like me at all and everything felt worse this time around. A new medication to help with nuelasta side effects gave me even more anxiety and I just couldn’t shake the feeling. Which caused it to build and build and for the first time I had a bit of trouble because I couldn’t get back to feeling like me as quickly and I became so anxious that I gave myself my first panic attack. I didn’t know I was doing that. I thought something was wrong. My blood pressure, something spread, who knows... but it was just all me, in my head. I couldn’t calm down. I’m ok now. And I’ll be ok. I’m so lucky to have the best support system- husband, parents, sister, friends, and an amazing team of doctors who are willing to go more than the extra mile to help me. Seeing me at a moments notice just to ease my mind, finding ways to help me. And why do I feel like this now verses a few days ago? Well I’ll be working on getting to the bottom of that too but probably because this is a lot. I know I’ll be fine at the end of all of this but to get there is just pure hell sometimes. There are things within myself I still need to process and work through since this nasty sickness came into our lives. It happened and I just literally kept on going. No time to really let it sink in. Questions that will never be answered like why me and why now. And then there are those times when I don’t feel so great and I have to push it aside and just be a mom. That’s hard. And now it’s Wednesday morning and I’m still ok and feeling even better than yesterday. But perfect example is last night I was so beyond tired because I was up at 4am Tuesday morning for whatever reason and all I wanted to do was go to bed early last night. But Matthew had trouble sleeping and wouldn’t stay in his bed and kept coming out to us while I was on the couch watching tv and Jason was making Matthew’s lunch for today. I couldn’t go to bed because then Ryan started crying so Jason ran into Ryan and I stayed with Matthew. Matthew actually fell asleep on me. On the couch. Snuggled up into me and fell asleep. My 4 and a half year old who we are registering for kindergarten today. He hasn’t done that in years. So I just sat there and soaked it up. But I didn’t go to bed again until late again because he came first. Which is fine. But like I said there are times when I feel yucky and I have to push it aside. Or sometimes I can’t push it aside and Matthew has to see me, or I have to leave the room. There are times when I’m by myself and my brain won’t shut off. I’ll learn how to manage better. And it’s Wednesday again and now I have lots of things planned for the rest of the week until Sunday at least. Because then next week starts and it’s just a few days away from what’s coming again. And now I don’t know what to expect because it’s a new chemo. Will it be harder? Have no idea. I’m assuming it might be. Because this stuff in me is poison and it’s attacking everything in my body to get rid of this cancer. And each time I go I get more and more of it. I know my bone pain might be a little worse. But aside from that it’s the unknown again. I’ll have my game face on as I always do and do what is necessary. I’m just again so thankful for my team of supporters. And medication. I’m learning that sometimes just the right kind of medication can be good for me right now. And I know by posting all of this I’m making myself that much more vulnerable but I know that I have lots of people following me and following my blogs. And every so often I get a random message from someone I hadn’t heard from in years to say I made them go get checked or if there’s anything they could do for me to let them know or to share their stories of it happening to them, a family member, a friend, or just to say they are thinking/praying for me. It means the world to me. So thank you. I hope what I’m going through can at least help someone else somehow. Something good has to come out of all of this. 💗💪🏻🙏
It’s only 6:30am Tuesday morning. I’m just lying in my bed and I’ve never been so grateful because I can already tell that I’m starting to feel like me again. Thank goodness I can feel me. Not medicated me, not groggy me, not I can’t function me, but me. I’m back. And I Iay here not ashamed to say I’m crying tears of joy this morning because it’s never felt so good to feel like me. Calm me. The past few days were agonizing, as I couldn’t feel like me at all and everything felt worse this time around. A new medication to help with nuelasta side effects gave me even more anxiety and I just couldn’t shake the feeling. Which caused it to build and build and for the first time I had a bit of trouble because I couldn’t get back to feeling like me as quickly and I became so anxious that I gave myself my first panic attack. I didn’t know I was doing that. I thought something was wrong. My blood pressure, something spread, who knows... but it was just all me, in my head. I couldn’t calm down. I’m ok now. And I’ll be ok. I’m so lucky to have the best support system- husband, parents, sister, friends, and an amazing team of doctors who are willing to go more than the extra mile to help me. Seeing me at a moments notice just to ease my mind, finding ways to help me. And why do I feel like this now verses a few days ago? Well I’ll be working on getting to the bottom of that too but probably because this is a lot. I know I’ll be fine at the end of all of this but to get there is just pure hell sometimes. There are things within myself I still need to process and work through since this nasty sickness came into our lives. It happened and I just literally kept on going. No time to really let it sink in. Questions that will never be answered like why me and why now. And then there are those times when I don’t feel so great and I have to push it aside and just be a mom. That’s hard. And now it’s Wednesday morning and I’m still ok and feeling even better than yesterday. But perfect example is last night I was so beyond tired because I was up at 4am Tuesday morning for whatever reason and all I wanted to do was go to bed early last night. But Matthew had trouble sleeping and wouldn’t stay in his bed and kept coming out to us while I was on the couch watching tv and Jason was making Matthew’s lunch for today. I couldn’t go to bed because then Ryan started crying so Jason ran into Ryan and I stayed with Matthew. Matthew actually fell asleep on me. On the couch. Snuggled up into me and fell asleep. My 4 and a half year old who we are registering for kindergarten today. He hasn’t done that in years. So I just sat there and soaked it up. But I didn’t go to bed again until late again because he came first. Which is fine. But like I said there are times when I feel yucky and I have to push it aside. Or sometimes I can’t push it aside and Matthew has to see me, or I have to leave the room. There are times when I’m by myself and my brain won’t shut off. I’ll learn how to manage better. And it’s Wednesday again and now I have lots of things planned for the rest of the week until Sunday at least. Because then next week starts and it’s just a few days away from what’s coming again. And now I don’t know what to expect because it’s a new chemo. Will it be harder? Have no idea. I’m assuming it might be. Because this stuff in me is poison and it’s attacking everything in my body to get rid of this cancer. And each time I go I get more and more of it. I know my bone pain might be a little worse. But aside from that it’s the unknown again. I’ll have my game face on as I always do and do what is necessary. I’m just again so thankful for my team of supporters. And medication. I’m learning that sometimes just the right kind of medication can be good for me right now. And I know by posting all of this I’m making myself that much more vulnerable but I know that I have lots of people following me and following my blogs. And every so often I get a random message from someone I hadn’t heard from in years to say I made them go get checked or if there’s anything they could do for me to let them know or to share their stories of it happening to them, a family member, a friend, or just to say they are thinking/praying for me. It means the world to me. So thank you. I hope what I’m going through can at least help someone else somehow. Something good has to come out of all of this. 💗💪🏻🙏
Sunday, March 3, 2019
Saturday March 3, 2019
I haven’t been writing much recently because what is there really to write? I’m living in what feels like a ground hog day where every week is the same story. And am I really supposed to bore you with my reality every week? But then again you are my supporters and when I feel down or am having a hard day it’s you guys who help get me through so then maybe I am supposed to write and share.
People that see me on a daily basis, they know what every day is like. Monday of treatment week I start to get anxious. Tuesday of treatment week I put my game face on and get into my mode. Wednesday treatment day I go and I just do it. I come home and I’m tired but it’s not too bad. Thursday I get tired and sleep more. Friday is bearable until later in the day. That’s when the steroids and the pre-meds from the chemo infusion wear off and the neulasta sets in and I know I’m in for a rough couple of days. Friday evenings every single muscle in my body aches from my head to my eyelids, to my chest, to my toes. I had a medicine this time to help, which did help, so it wasn’t too unbearable but I went to bed fri night at 5:30pm and slept until 7am. So that was good. Then Saturday. The anxiety sets in. The blood boiling I can feel my blood racing all throughout my body anxiety. And by Saturday night it becomes the anxiety when you want something bad enough to end already. But it doesn’t. And your mind can’t focus on anything else. That’s when my eyes are a bit blurry and off so I can’t watch tv, can’t read, can’t sit in a lighted room too long, I can’t eat, I can’t play with my kids, I can’t pick Ryan up, there’s nothing. I went for a walk, I took a shower, nothing. Finally 7:30pm I took some meds and I went to sleep. Sunday comes and I’m better but not out of the woods. I wake up and I’m ok for a bit but so so tired still. I just woke up from a 2 hr nap. I know sleep is good. I wish I could go back to sleep again. It passes the time so nicely. I still can’t eat, my muscle fatigue stinks so even typing this is hard and i def can’t hold my baby for long. So maybe by tonight I’ll come around a bit more and by tomorrow I’ll be on the mend, making my way back to the well side. By the time Wednesday comes I’ll be better and then just a few more days until the next storm comes. With this next storm comes a different chemo infusion so I have no idea what to expect. I’m hoping that it will be easier than this. Let’s all hope it’s easier than this. I can do it, but just a bit easier would be just so nice. So when you see me on my good days and I may look like I’m doing good, and for the most part I am, I’m still sick though and still fighting one hell of a battle every day.
I haven’t been writing much recently because what is there really to write? I’m living in what feels like a ground hog day where every week is the same story. And am I really supposed to bore you with my reality every week? But then again you are my supporters and when I feel down or am having a hard day it’s you guys who help get me through so then maybe I am supposed to write and share.
People that see me on a daily basis, they know what every day is like. Monday of treatment week I start to get anxious. Tuesday of treatment week I put my game face on and get into my mode. Wednesday treatment day I go and I just do it. I come home and I’m tired but it’s not too bad. Thursday I get tired and sleep more. Friday is bearable until later in the day. That’s when the steroids and the pre-meds from the chemo infusion wear off and the neulasta sets in and I know I’m in for a rough couple of days. Friday evenings every single muscle in my body aches from my head to my eyelids, to my chest, to my toes. I had a medicine this time to help, which did help, so it wasn’t too unbearable but I went to bed fri night at 5:30pm and slept until 7am. So that was good. Then Saturday. The anxiety sets in. The blood boiling I can feel my blood racing all throughout my body anxiety. And by Saturday night it becomes the anxiety when you want something bad enough to end already. But it doesn’t. And your mind can’t focus on anything else. That’s when my eyes are a bit blurry and off so I can’t watch tv, can’t read, can’t sit in a lighted room too long, I can’t eat, I can’t play with my kids, I can’t pick Ryan up, there’s nothing. I went for a walk, I took a shower, nothing. Finally 7:30pm I took some meds and I went to sleep. Sunday comes and I’m better but not out of the woods. I wake up and I’m ok for a bit but so so tired still. I just woke up from a 2 hr nap. I know sleep is good. I wish I could go back to sleep again. It passes the time so nicely. I still can’t eat, my muscle fatigue stinks so even typing this is hard and i def can’t hold my baby for long. So maybe by tonight I’ll come around a bit more and by tomorrow I’ll be on the mend, making my way back to the well side. By the time Wednesday comes I’ll be better and then just a few more days until the next storm comes. With this next storm comes a different chemo infusion so I have no idea what to expect. I’m hoping that it will be easier than this. Let’s all hope it’s easier than this. I can do it, but just a bit easier would be just so nice. So when you see me on my good days and I may look like I’m doing good, and for the most part I am, I’m still sick though and still fighting one hell of a battle every day.
Subscribe to:
Posts (Atom)