Well, I
completed cycle one of the Temodar with very few side effects. I've been
able to manage the nausea pretty well, and right now, it only rears it's ugly
head about once a week...the fatigue, on the other hand....well, that's taking
a bit more to get used to. I've been taking Ritalin to help increase my
energy for about a year now, and they've also added ginseng (mid-morning and
mid-afternoon) to help, which is does - when I remember to take it.
(I just used this reminder to myself to add another reminder on my calendar, which will hopefully keep me on schedule....)
Anyways, if the fatigue is the only thing I have to complain about, I suppose I should be happy. And, I am. Or, I will be, once we get an indication this week (blood draw on Thursday) to find out if this is working. We are going to pull a CEA on Thursday, and hopefully I'll get some good news.
My concern is silly, but it's this - if I'm not feeling sick...if I'm not "feeling" like I'm on chemo....could this possibly be working. I keep trying to convince myself that the universe is just giving me a bye on this one. Like, I've been through enough, so it's time for a break in side effects. Silly, I know, but there you go. I actually asked my PA and nurse about this, and they both said that - generally - this chemo is fairly well tolerated, so hopefully....we'll see some good news on Thursday.
I think right now that the fatigue is the hardest thing to deal with. I have SO MUCH to do, and so much that I want to do, and by 6 or 7 each night, I am completely and utterly wiped out. I don't know how else to describe it, other than that it takes all of my willpower to physically get up and do something. This includes making dinner, cleaning up after dinner, getting the kids ready and off to bed, then getting ME off to bed. My bedtime currently is between 8:00 and 8:30. Talk about lame-o. I'm hoping that if I can get into a more regular schedule with the ginseng, it will help.
*********************************
I "graduated" from occupational therapy last week. I've made some pretty amazing improvements from early June, which is when we first started. Jen (my therapist) has done several assessment/evaluations on me, and the improvement is pretty marked. She and I worked together to come up with a home program that I can continue with (and I have been, for the most part), so I can continue to increase my muscle tone and tightness. I'll start back up with physical therapy in a bit - I have too much going on right now to commit to 3 days a week.
*********************************
Some folks have asked how my body is holding up during all of this. As I said above, it's tired. Just worn out, completely drained, utterly exhausted. During the day, I'm usually able to keep up with what needs to be done, for the most part, but by the end of the day, I'm done. I'd like to say I'm seeing improvement in my back, and I suppose I'd be lying if I said I didn't, but when you're the one dealing with the pain and tightness, (and being someone who may or may not have a stubborn streak a mile long....) it's hard to see small improvements as anything more than really small improvements. I've been able to keep the walker use to a minimum (I think I told you all that I got a four-wheeled walker that I blinged out - which I should post pictures of...). Instead, I'm trying to push myself without overdoing it. For example, I took it to Portland with me a few weeks ago, when I surprised my friend for her 40th birthday. I used it once while I was there, and then again only in the airport. I'll be using it again when I travel next week. Generally, during the day here and there, I'd rather use, for example, a grocery cart if I'm shopping. It keeps me upright, and gives me something to lean on if I need it. Otherwise, the cart (or walker) is used more as a way to help me keep my body upright and in a good posture position.
I'll say - there is quite a level of frustration that goes along with having to use the walker. I feel so....irritated at myself. I know I need it, and I understand why it's a good thing. But, the fact that I even have to have the damn thing kind of pisses me off. I'm not going to lie. I get so frustrated that I can't just do what I want to do - my mind thinks I could go out and walk around the block. My body disagrees, and makes it's opinion known all too often.
As a 37-year old mom, I shouldn't be using a walker. I should be able to get up, play with my kids, remain active until bedtime, and be able to take care of my family and myself. I find it absolutely maddening that I can't do many of those things, and have to rely on the help of others. I know that people want to help, and I'm grateful that they are willing to help....but I don't want to keep on needing that help. I want to be able to do everything I used to be able to do.
When I was doing my evaluation for physical therapy a few weeks ago, I actually started crying when we were talking about where I used to be, physically, and where I am now. I think that was when it really hit me, how far I am from that person I was back then. When I was rediagnosed, I was running (well, walking/running), working out 3-4 times a week, working full-time, taking care of the kids and their many activities, keeping up the house....I was a MOM. Now, I can't do so many of those things, and it can bring me to tears at the drop of a hat. Both the therapist and I were in tears when we talked about it, and she seemed confident that I can get back to that physical strength and dexterity. I have some doubts, given where I am and how far I am from that goal. But, I'm going to keep trying. I have to - I need to get back to work, and I need to get back to living a full life.
**********************************
I do have some more travel coming up. I'll be going to Washington DC next week to advocate on Capital Hill (assuming the government isn't shut down), and from there, I'll be heading to Miami to attend the Colon Cancer Alliance's National Conference. I'm super excited about both trips, and have already made some arrangements to allow for my physical inabilities. For example, travel days are fairly well spaced, allowing me plenty of time between travel and meetings to recover. In addition to that, I have a motorized scooter set up for me for the day I'll be on the Hill, allowing me to conserve my energy for what really matters - talking about maintaining funding for medical imaging.
**********************************
Alright - I'll stop there. I'll definitely update once I know how the chemo is working, and what the next step is when I talk with my docs on Friday. Meantime, have a great week!
(I just used this reminder to myself to add another reminder on my calendar, which will hopefully keep me on schedule....)
Anyways, if the fatigue is the only thing I have to complain about, I suppose I should be happy. And, I am. Or, I will be, once we get an indication this week (blood draw on Thursday) to find out if this is working. We are going to pull a CEA on Thursday, and hopefully I'll get some good news.
My concern is silly, but it's this - if I'm not feeling sick...if I'm not "feeling" like I'm on chemo....could this possibly be working. I keep trying to convince myself that the universe is just giving me a bye on this one. Like, I've been through enough, so it's time for a break in side effects. Silly, I know, but there you go. I actually asked my PA and nurse about this, and they both said that - generally - this chemo is fairly well tolerated, so hopefully....we'll see some good news on Thursday.
I think right now that the fatigue is the hardest thing to deal with. I have SO MUCH to do, and so much that I want to do, and by 6 or 7 each night, I am completely and utterly wiped out. I don't know how else to describe it, other than that it takes all of my willpower to physically get up and do something. This includes making dinner, cleaning up after dinner, getting the kids ready and off to bed, then getting ME off to bed. My bedtime currently is between 8:00 and 8:30. Talk about lame-o. I'm hoping that if I can get into a more regular schedule with the ginseng, it will help.
*********************************
I "graduated" from occupational therapy last week. I've made some pretty amazing improvements from early June, which is when we first started. Jen (my therapist) has done several assessment/evaluations on me, and the improvement is pretty marked. She and I worked together to come up with a home program that I can continue with (and I have been, for the most part), so I can continue to increase my muscle tone and tightness. I'll start back up with physical therapy in a bit - I have too much going on right now to commit to 3 days a week.
*********************************
Some folks have asked how my body is holding up during all of this. As I said above, it's tired. Just worn out, completely drained, utterly exhausted. During the day, I'm usually able to keep up with what needs to be done, for the most part, but by the end of the day, I'm done. I'd like to say I'm seeing improvement in my back, and I suppose I'd be lying if I said I didn't, but when you're the one dealing with the pain and tightness, (and being someone who may or may not have a stubborn streak a mile long....) it's hard to see small improvements as anything more than really small improvements. I've been able to keep the walker use to a minimum (I think I told you all that I got a four-wheeled walker that I blinged out - which I should post pictures of...). Instead, I'm trying to push myself without overdoing it. For example, I took it to Portland with me a few weeks ago, when I surprised my friend for her 40th birthday. I used it once while I was there, and then again only in the airport. I'll be using it again when I travel next week. Generally, during the day here and there, I'd rather use, for example, a grocery cart if I'm shopping. It keeps me upright, and gives me something to lean on if I need it. Otherwise, the cart (or walker) is used more as a way to help me keep my body upright and in a good posture position.
I'll say - there is quite a level of frustration that goes along with having to use the walker. I feel so....irritated at myself. I know I need it, and I understand why it's a good thing. But, the fact that I even have to have the damn thing kind of pisses me off. I'm not going to lie. I get so frustrated that I can't just do what I want to do - my mind thinks I could go out and walk around the block. My body disagrees, and makes it's opinion known all too often.
As a 37-year old mom, I shouldn't be using a walker. I should be able to get up, play with my kids, remain active until bedtime, and be able to take care of my family and myself. I find it absolutely maddening that I can't do many of those things, and have to rely on the help of others. I know that people want to help, and I'm grateful that they are willing to help....but I don't want to keep on needing that help. I want to be able to do everything I used to be able to do.
When I was doing my evaluation for physical therapy a few weeks ago, I actually started crying when we were talking about where I used to be, physically, and where I am now. I think that was when it really hit me, how far I am from that person I was back then. When I was rediagnosed, I was running (well, walking/running), working out 3-4 times a week, working full-time, taking care of the kids and their many activities, keeping up the house....I was a MOM. Now, I can't do so many of those things, and it can bring me to tears at the drop of a hat. Both the therapist and I were in tears when we talked about it, and she seemed confident that I can get back to that physical strength and dexterity. I have some doubts, given where I am and how far I am from that goal. But, I'm going to keep trying. I have to - I need to get back to work, and I need to get back to living a full life.
**********************************
I do have some more travel coming up. I'll be going to Washington DC next week to advocate on Capital Hill (assuming the government isn't shut down), and from there, I'll be heading to Miami to attend the Colon Cancer Alliance's National Conference. I'm super excited about both trips, and have already made some arrangements to allow for my physical inabilities. For example, travel days are fairly well spaced, allowing me plenty of time between travel and meetings to recover. In addition to that, I have a motorized scooter set up for me for the day I'll be on the Hill, allowing me to conserve my energy for what really matters - talking about maintaining funding for medical imaging.
**********************************
Alright - I'll stop there. I'll definitely update once I know how the chemo is working, and what the next step is when I talk with my docs on Friday. Meantime, have a great week!
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