Well, my
expectations that I'd be up and at 'em yesterday were completely and totally
wrong. Unlike previous rounds, this one kept me down until, well, today.
And, of course, since it's only 9am, that still remains to be seen.
In previous rounds where chemo is Tues-Thurs, I'm usually able to get around a bit on Friday and function semi-normally by Saturday. Not so this round. Thank goodness Levi was home this week - Friday, I did nothing but sleep and eat. (By the way, I hate the steroids and the fact that eating settles my tummy - I've gained 5-10 lbs, and it sucks....) I assumed, based on previous rounds, that by Saturday, I'd feel better. My body had other plans.
As I said, Friday sucked. I was nauseous all day, and basic things like getting out of bed exhausted me. I slept most of the day away, on the couch in the living room so that I felt like I was "participating" in the family activities. I was popping Zofran and Ativan like they were candy just to keep the nausea at bay. I can honestly say that this was, by far, the worst day post-chemo. Chemo days suck - carrying around a pump (and occasionally forgetting it, so it pulls on the tubing - BIG fun), trying to make it through the day without getting sick. Yeah - they suck. But, in the past, post-chemo days have been for recovery. Not so much this time around. Friday was nothing but sleep.
I had hopes that yesterday would be better. It was. Marginally. I was able to shower (first time since Tuesday, so I consider that a win). And, then I took a nap. My good friends from work (Akemi, Sylvia and Charise) came over to help us get the house cleaned. And, I watched them while napping on the couch. Again. I was able to survive the residual nausea with Zofran (no Ativan needed yesterday) and snacking (again, weight gain sucks). The light-headedness kicked in big time during the day, too. My blood pressure was ok until about 6pm, when it dipped to 97/70. It wasn't until about 6pm that I started to feel "normal" again (and even that's debatable). I was exhausted, but started to mentally feel like things were back where they needed to be.
FYI - just took my bp, and it's 98/79. Interesting.
I'm hoping today is better. I've been able to sleep a lot more this round (thank you, my love), which has absolutely helped. I know that they increased the dosage of the chemo this time, which definitely made a difference. I will be asking them to NOT do that again - I'm not sure I can handle it. My doctor agrees that there needs to be a balance in the levels of chemo that allows the meds to work but also allows me a quality of life. I think we may have found a level that isn't going to work. But, I think I'll wait until the CT scan next week to make a final decision.
Mentally, I can feel this doing a number on me. It's so difficult to want to be involved with my family and to not be able to. I can feel my resolve wavering. I want to fight this battle, but at what cost? Is it worth the days I feel like crap for a few days of feeling good? Where does the balance come in?
I'm hoping that I start to feel better emotionally. I'm going to see my mind/body therapist this week - it's been two weeks, and I think I need to start seeing him weekly. Going through something like this is a lot more difficult that I thought it would be. You start to wonder about the what-ifs, and the future. As in, what happens if you don't have one. Questions start to come up - what kind of funeral do I want? (By the way, I've decided closed casket - I don't want people seeing me that way.) How do I want my kids to remember me? (Hopefully, as a good mom who loved them more than anything in the world...) Am I getting enough pictures of the times while I'm here and happy, so that when I'm gone, the kids and Levi remember me *that way*, rather than as a sick me? Will I let people down if I don't make it through this? (This one bothers me a lot. I feel like there are a lot of people depending on me, and it terrifies me to think I might let someone down.)
Is my brain preparing me for the inevitable, by bringing these questions up? Or, is it just anal-retentive me, wanting to be prepared for every outcome? I just don't know. I want to believe that it's just my way of wanting to control as much as I can. I like to prepare for all possible outcomes. Unfortunately, me not making it through this is one of the possible outcomes. Whether or not I like it, it's a possibility. A very real one, and one I have to think about. It's been on my mind lately (especially this week, as I'm suffering through the chemo - one thing about something like this is that it gives you time to think, which may or may not be a good thing). I'm going to bring it up to Steve, my mind/body guy on Tuesday. We'll see what he has to say.
I imagine that facing a stage 4 cancer diagnosis is a process of acceptance. In my case, there was the sheer shock of finding out the cancer had returned, and it's spread. Have I fully dealt with that? Nope. Who wants to? I accept that I have cancer in lymph nodes and in my lungs. In my head, I understand that, and what it means. In my heart, I think I'm just now starting to let it sink it. And, it sucks. It just effing sucks.
It's not fair. Not fair to me. Not fair to my husband. Not fair to my kids. Not fair to my parents, my brothers, my family and friends. I want to live - I have too much I want to do. I want to see the volcanoes in Hawaii. I want to go back to DisneyWorld with my CPers and their families, and make the memories we talked about almost 20 years ago. I want to make it to my 20th, 30th, 40th high school reunions. I want to see my kids graduate from high school, get married, have families of their own. I want to go on a honeymoon with Levi (no, we still haven't had a *real* honeymoon - the one we had, we were both sick with pneumonia....not cool!). I want to renew our vows when I'm not pregnant (LOL). I want to see my brothers get married, have their own families and watch the kids grow up together.
I want to have my blue hair back. I know that's dumb, but it's true. I want to be able to run a 5k again. I want to run a half-marathon. I want to go back to work and complain about my co-workers. :) I want to advocate for patients again, and be a survival story for those fighting this battle.
I want to be in remission again.
So, I suppose that means continuing to fight. In order to get to do these things, I need to keep on keeping on, as they say. Sometimes, being upbeat is pretty hard. Sorry for the downer blog posting, but I needed to get these thoughts down so I can process them. Maybe putting them to words will help me figure things out. I think that I'll feel better after we have the CT scan next week (assuming the results come out in my favor). Right now, it's good to see that the CEA levels are coming down, but there's always a concern. At least, in my mind. Every twinge in my chest makes me wonder "Is that the cancer spreading?" It sucks. Big time. I'm hoping the CT scan reveals that things are under control.
On that *upbeat* note (sigh), I'll end here. Again, apologies for the downer post. I'm still trying to work though things, and this is where I do that. Hoping y'all can understand that. ((hugs))
In previous rounds where chemo is Tues-Thurs, I'm usually able to get around a bit on Friday and function semi-normally by Saturday. Not so this round. Thank goodness Levi was home this week - Friday, I did nothing but sleep and eat. (By the way, I hate the steroids and the fact that eating settles my tummy - I've gained 5-10 lbs, and it sucks....) I assumed, based on previous rounds, that by Saturday, I'd feel better. My body had other plans.
As I said, Friday sucked. I was nauseous all day, and basic things like getting out of bed exhausted me. I slept most of the day away, on the couch in the living room so that I felt like I was "participating" in the family activities. I was popping Zofran and Ativan like they were candy just to keep the nausea at bay. I can honestly say that this was, by far, the worst day post-chemo. Chemo days suck - carrying around a pump (and occasionally forgetting it, so it pulls on the tubing - BIG fun), trying to make it through the day without getting sick. Yeah - they suck. But, in the past, post-chemo days have been for recovery. Not so much this time around. Friday was nothing but sleep.
I had hopes that yesterday would be better. It was. Marginally. I was able to shower (first time since Tuesday, so I consider that a win). And, then I took a nap. My good friends from work (Akemi, Sylvia and Charise) came over to help us get the house cleaned. And, I watched them while napping on the couch. Again. I was able to survive the residual nausea with Zofran (no Ativan needed yesterday) and snacking (again, weight gain sucks). The light-headedness kicked in big time during the day, too. My blood pressure was ok until about 6pm, when it dipped to 97/70. It wasn't until about 6pm that I started to feel "normal" again (and even that's debatable). I was exhausted, but started to mentally feel like things were back where they needed to be.
FYI - just took my bp, and it's 98/79. Interesting.
I'm hoping today is better. I've been able to sleep a lot more this round (thank you, my love), which has absolutely helped. I know that they increased the dosage of the chemo this time, which definitely made a difference. I will be asking them to NOT do that again - I'm not sure I can handle it. My doctor agrees that there needs to be a balance in the levels of chemo that allows the meds to work but also allows me a quality of life. I think we may have found a level that isn't going to work. But, I think I'll wait until the CT scan next week to make a final decision.
Mentally, I can feel this doing a number on me. It's so difficult to want to be involved with my family and to not be able to. I can feel my resolve wavering. I want to fight this battle, but at what cost? Is it worth the days I feel like crap for a few days of feeling good? Where does the balance come in?
I'm hoping that I start to feel better emotionally. I'm going to see my mind/body therapist this week - it's been two weeks, and I think I need to start seeing him weekly. Going through something like this is a lot more difficult that I thought it would be. You start to wonder about the what-ifs, and the future. As in, what happens if you don't have one. Questions start to come up - what kind of funeral do I want? (By the way, I've decided closed casket - I don't want people seeing me that way.) How do I want my kids to remember me? (Hopefully, as a good mom who loved them more than anything in the world...) Am I getting enough pictures of the times while I'm here and happy, so that when I'm gone, the kids and Levi remember me *that way*, rather than as a sick me? Will I let people down if I don't make it through this? (This one bothers me a lot. I feel like there are a lot of people depending on me, and it terrifies me to think I might let someone down.)
Is my brain preparing me for the inevitable, by bringing these questions up? Or, is it just anal-retentive me, wanting to be prepared for every outcome? I just don't know. I want to believe that it's just my way of wanting to control as much as I can. I like to prepare for all possible outcomes. Unfortunately, me not making it through this is one of the possible outcomes. Whether or not I like it, it's a possibility. A very real one, and one I have to think about. It's been on my mind lately (especially this week, as I'm suffering through the chemo - one thing about something like this is that it gives you time to think, which may or may not be a good thing). I'm going to bring it up to Steve, my mind/body guy on Tuesday. We'll see what he has to say.
I imagine that facing a stage 4 cancer diagnosis is a process of acceptance. In my case, there was the sheer shock of finding out the cancer had returned, and it's spread. Have I fully dealt with that? Nope. Who wants to? I accept that I have cancer in lymph nodes and in my lungs. In my head, I understand that, and what it means. In my heart, I think I'm just now starting to let it sink it. And, it sucks. It just effing sucks.
It's not fair. Not fair to me. Not fair to my husband. Not fair to my kids. Not fair to my parents, my brothers, my family and friends. I want to live - I have too much I want to do. I want to see the volcanoes in Hawaii. I want to go back to DisneyWorld with my CPers and their families, and make the memories we talked about almost 20 years ago. I want to make it to my 20th, 30th, 40th high school reunions. I want to see my kids graduate from high school, get married, have families of their own. I want to go on a honeymoon with Levi (no, we still haven't had a *real* honeymoon - the one we had, we were both sick with pneumonia....not cool!). I want to renew our vows when I'm not pregnant (LOL). I want to see my brothers get married, have their own families and watch the kids grow up together.
I want to have my blue hair back. I know that's dumb, but it's true. I want to be able to run a 5k again. I want to run a half-marathon. I want to go back to work and complain about my co-workers. :) I want to advocate for patients again, and be a survival story for those fighting this battle.
I want to be in remission again.
So, I suppose that means continuing to fight. In order to get to do these things, I need to keep on keeping on, as they say. Sometimes, being upbeat is pretty hard. Sorry for the downer blog posting, but I needed to get these thoughts down so I can process them. Maybe putting them to words will help me figure things out. I think that I'll feel better after we have the CT scan next week (assuming the results come out in my favor). Right now, it's good to see that the CEA levels are coming down, but there's always a concern. At least, in my mind. Every twinge in my chest makes me wonder "Is that the cancer spreading?" It sucks. Big time. I'm hoping the CT scan reveals that things are under control.
On that *upbeat* note (sigh), I'll end here. Again, apologies for the downer post. I'm still trying to work though things, and this is where I do that. Hoping y'all can understand that. ((hugs))
Comments:
Whidbey
Woman said...
Love
you. Respect your honesty & can relate to the depths of your emotions &
fears. I wish, oh how I wish, no one had to go through this! Hugs.
May
20, 2012 at 9:32 AM
steffy said...
hang
in there. you are strong.
steph h
steph h
May
20, 2012 at 11:10 AM
Love
you!
May
20, 2012 at 11:48 AM
Sorry
you've had a difficult time this round. I know how frustrating it is to expect
a good day, and end up still feeling lousy.
I hope that talking with a therapist helps you process your "what if" thoughts. I think it's better to deal with them, than to try to hide them and pretend that everything is ok.
Hoping and praying for a good week ahead for you!
I hope that talking with a therapist helps you process your "what if" thoughts. I think it's better to deal with them, than to try to hide them and pretend that everything is ok.
Hoping and praying for a good week ahead for you!
May
20, 2012 at 1:00 PM
You
are right - it is not fair. It is totally not fair. Keep writing, we're
listening. *cyberhugs*
May
20, 2012 at 4:37 PM
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