I am starting radiation tomorrow! While I'm nervous, I know I can't finish until I start so I am excited to get this show on the road. During my final consultation on Friday there were some positives, a few negatives and one down right funny moment.
First, the Good: Apparently you burn extra calories while doing radiation. Yes! I'm skeptical but wouldn't that be awesome!?! My nurse was adamant about me needing to keep my calories up....no problem! Well, hopefully it won't be a problem (see the bad).
I will go in every morning, Monday-Friday at 7:15 for five weeks. I'm really happy I got an early appointment time so I won't have to miss work. It lasts about 20-30 minutes. I'm hoping I'll be disciplined enough to keep up with using the treadmill every morning at 5:30 (more calories!).
The Bad: This is going to be expensive. I mean, in the grand scheme of things, I have very good insurance and I know it could be so much worse, but those co-pays are going to add up fast when I'm going every day.
The other bad part is the side effects. Sounds like I could have some significant pain and since there are a lot of "high functioning" areas where they will be doing the radiation...some of my...um bodily functions could be affected. Of course, there is the ever present promise of diarrhea, so that will be fun. But, like I've said before, it is 5 weeks and I can do anything for 5 weeks.
The Funny: This part wasn't so funny at first but now it cracks me up. When I went for my consult on Friday the nurse started explaining what I could expect in terms of side effects. She said the first week would be ok but somewhere during the second week my breast would start to look very sunburned. HUH? I said, "that's weird, why would my breast look sunburned?" She said, "because that is where the radiation is going for your breast cancer" HUH? "Um, I don't have breast cancer" (or do you know something I don't know??). She says "Ooops! What kind of cancer do you have?" "Colon"...."oh, well then you are going to have a lot more side effects...let me get my paperwork on that!" Good grief! Luckily the radiation technicians had already done their job and they no where the radiation is going.
So that's all for now. I'll update again soon.
Sunday, January 20, 2013
Wednesday, January 9, 2013
Big Ben, Parliament.
I had planned on posting a jubilant piece about how I wasn't doing chemo today, but it turns out that chemo is the gift that keeps on giving. And there is no gift receipt. I had my post-chemo follow up today where I found out I needed to do "low dose" chemo while I am doing radiation. So....I'm not done with chemo after all. I am sure you all are as sick of my doom and gloom posts as I am but I am seriously bummed that I am not done. Chemo seriously sucks....and while this "low dose" means I take a pill twice a day instead of needing to go to the lab all day once every two weeks, I have heard that the pill form actually has more side effects than Iv chemo....and that does not appeal to me at all.
The good news is that it is only five weeks and I can do anything for five weeks. Hopefully that will be it and THEN I can move on, but I'm so tired of my finish line constantly moving backwards. And did I mention that I hate chemo? I'm feeling pretty good right now but the neuropathy in my fingers and feet is really bad. My feet are so numb that I sometimes miss my footing and almost trip. This afternoon, I finally ate it on the drive way and scratched up my hand and leg pretty bad. I don't believe the new meds will make that worse but there's a slew of other side effects to get used to.
So.....that's the update. I meet with the radiation oncologist tomorrow and should get to start radiation the week of the 21st.
The good news is that it is only five weeks and I can do anything for five weeks. Hopefully that will be it and THEN I can move on, but I'm so tired of my finish line constantly moving backwards. And did I mention that I hate chemo? I'm feeling pretty good right now but the neuropathy in my fingers and feet is really bad. My feet are so numb that I sometimes miss my footing and almost trip. This afternoon, I finally ate it on the drive way and scratched up my hand and leg pretty bad. I don't believe the new meds will make that worse but there's a slew of other side effects to get used to.
So.....that's the update. I meet with the radiation oncologist tomorrow and should get to start radiation the week of the 21st.
Wednesday, December 26, 2012
The Final Countdown ....
Da da Da da, dadadadada
I am hooked up to my chemo drip for (hopefully) the last time ever. I was warned it might be a little strange when I went for my last session and, well, it was. We'll see how Friday goes since that is really my last day but I think the bottom line is that I am not going to feel done or *free* or less terrified until I see that PET scan and unfortunately, I may have a while before I can do that. Don't get me wrong, life "chemo free" is going to bring me a great deal of happiness. I am going to feel like I have so much more energy and time on my hands. I'm really looking forward to using that time and energy wisely.
I am fully expecting the PET scan to come back clear, but sometimes there is a voice in my head that spews statistics (which is really weird when you consider how bad I was at statistics in college) and the fear comes back. I get scared that decreasing my dose of chemo will make it not all be gone. What if I wasn't strong enough to handle the amount of medicine I needed to fight this thing?? Some people might say this type of thinking in not productive and I agree that blaming myself is not fair....but I do feel like I need to prepare myself for the fact that there is a chance I will not be "NED" (no evidence of disease). Hopefully that won't happen and I never have to see that freaking chemo lab or the truly wonderful people who work there and get treated there ever again. As I've said from the beginning, I haven't really had a choice to do chemo, work full time, raise kids, be a wife, etc. so I'm not necessarily proud of "accomplishing" anything....believe me, if I wasn't scared of dying, I would have quit chemo at session 8. But I am still generally happy to have made it to the end. And I think I did it with some grace and dignity, whcn I was feeling up to it ; ) Luckily last session was decent. Unfortunately, I feel kind of crummy already this time around. Guess that is the crapshoot that is chemo.
So at this time on Friday, I will be done. Hopefully I will feel ok, but even if I don't, I know it will be the last time I have to feel like that so I will suck it up. I will probably update after the weekend again and then I'll be back when radiation is about to start.
Hope everyone had a Merry Christmas!!
I am hooked up to my chemo drip for (hopefully) the last time ever. I was warned it might be a little strange when I went for my last session and, well, it was. We'll see how Friday goes since that is really my last day but I think the bottom line is that I am not going to feel done or *free* or less terrified until I see that PET scan and unfortunately, I may have a while before I can do that. Don't get me wrong, life "chemo free" is going to bring me a great deal of happiness. I am going to feel like I have so much more energy and time on my hands. I'm really looking forward to using that time and energy wisely.
I am fully expecting the PET scan to come back clear, but sometimes there is a voice in my head that spews statistics (which is really weird when you consider how bad I was at statistics in college) and the fear comes back. I get scared that decreasing my dose of chemo will make it not all be gone. What if I wasn't strong enough to handle the amount of medicine I needed to fight this thing?? Some people might say this type of thinking in not productive and I agree that blaming myself is not fair....but I do feel like I need to prepare myself for the fact that there is a chance I will not be "NED" (no evidence of disease). Hopefully that won't happen and I never have to see that freaking chemo lab or the truly wonderful people who work there and get treated there ever again. As I've said from the beginning, I haven't really had a choice to do chemo, work full time, raise kids, be a wife, etc. so I'm not necessarily proud of "accomplishing" anything....believe me, if I wasn't scared of dying, I would have quit chemo at session 8. But I am still generally happy to have made it to the end. And I think I did it with some grace and dignity, whcn I was feeling up to it ; ) Luckily last session was decent. Unfortunately, I feel kind of crummy already this time around. Guess that is the crapshoot that is chemo.
So at this time on Friday, I will be done. Hopefully I will feel ok, but even if I don't, I know it will be the last time I have to feel like that so I will suck it up. I will probably update after the weekend again and then I'll be back when radiation is about to start.
Hope everyone had a Merry Christmas!!
Tuesday, December 18, 2012
One More to Go!!!
I honestly can't believe I'm almost done with chemo. It's hard to explain as on the one hand, I had less than six months of chemo to do and I think we've all experienced how quickly six months can go. On the other hand, I had 12 cycles of chemo and got pretty sick, run down, in pain with almost every one, which made it feel like I would never get through. Cycles 9 and 10 were so hard I was seriously taking anxiety meds in preparation for number 11....and then.....nothing. This was possibly the easiest cycle I've had, including the first one and side effects are definitely supposed to be cumulative. I have no idea why I didn't have migraines, vomiting, debilitating exhaustion, though the neurotic in me is of course worried they didn't give me the right meds or dose. They show me everything they give me, but how do I know there wasn't some Kramer-esque mix up in the lab and I wound up with dextrose instead of 5-fu or Oxi. Yes, one of my chemo drugs is called 5- fu. I find it appropriate. Sometimes while I'm hurling into my trash can I find myself saying F U, fu. Not really but, I could say that. But now I only have one more opportunity to say that!! Of course, after this last cycle I'm hoping for another easy go of it, but if I need to take one on the chin and go out with a blaze of chemo induced glory then that is what I'll do. I've got a med cabinet full of anti-nausea meds that need to be used up before they expire. Bring it!
Alas I won't be completely done when I get disconnected on the 28th. I go in for my pre-radiation appointment on the 10th and then I should start radiation about two weeks after that. I will go in 5 days a week for 5 weeks but should be able to work and the side effects (if not the risks) are much less than chemo. I'm disappointed that my finish line has been pushed back, but I know I have to do everything I can to beat this thing...so...I'm doing radiation.
Hope everyone is having a happy and healthy holiday season.
Alas I won't be completely done when I get disconnected on the 28th. I go in for my pre-radiation appointment on the 10th and then I should start radiation about two weeks after that. I will go in 5 days a week for 5 weeks but should be able to work and the side effects (if not the risks) are much less than chemo. I'm disappointed that my finish line has been pushed back, but I know I have to do everything I can to beat this thing...so...I'm doing radiation.
Hope everyone is having a happy and healthy holiday season.
Friday, December 14, 2012
Some Perspective
I'm sitting in the chemo lab getting IV fluids, like I do each Friday after chemo, and watching the most horrific thing I've seen in years. A shooting at a Connecticut Elementary school where at least 18 children, most likely kindergardners have been killed. I feel sick to my stomach when I think of what they went through. I want to go grab Garrison and never let her out of my sight.
I was all set to post about me and how chemo is going but, screw me. Chemo is fine (it actually seems to be taking it easy on me this time), but cancer seems like such small potatoes when you compare it to losing your baby. I pray these families can find peace, I have no idea how you go on. I suppose if you have other children, you go on for them but I can't fathom the pain....and I think I know a bit about pain.
I was all set to post about me and how chemo is going but, screw me. Chemo is fine (it actually seems to be taking it easy on me this time), but cancer seems like such small potatoes when you compare it to losing your baby. I pray these families can find peace, I have no idea how you go on. I suppose if you have other children, you go on for them but I can't fathom the pain....and I think I know a bit about pain.
Wednesday, November 28, 2012
Top Ten Things I Can't Wait To Do
Now that I'm (hopefully) in the homestretch, I've been thinking of all things I can't wait to do once this hell is over. Some things I haven't been able to do due to the "condition" of my colon, some because of chemo, and some simply because I feel like crap. Hopefully these factors will all be history soon. So, here is the list:
10. Get organized. I am so exhausted and between work, doctor appointments and two kids I simply haven't had the time or energy to keep up with organizing the kids clothes or food, etc. Wes does a ton to help out but being organized is not one of his strengths and I feel like we are constantly wasting time looking for stuff. I can't wait until I can stay up past 8 pm and put some systems in place.
9. Exercise. Same reasons as above, zero energy and zero time. I've lost about 70 pounds since April but I think much of it was muscle. Also, after I'm done with chemo I won't be spending 10 days of each month too sick to eat so I need to start exercising so I don't gain it all back. I have no intentions of doing anything rigorous, I've run my marathons and biked my centuries, I'll be happy to just get 30 minutes walking on the treadmill and some weights each morning.
8. Eat mango. I tried that a couple of months ago and I seriously thought I was going to need to go to the ER. There are other fruits I miss too but mango is the big one.
7. Eat salad. Supposedly I can do this now, but I'm afraid (see above). I have had lettuce and tomato in small doses but I worry a whole salad would um, cause problems. And I've made it this far so...better safe than sorry.
6. Eat cashews and popcorn. These are a total no-no. It's one of those things that I really didn't think I'd care about but when you smell that popcorn, you want to get a handful, and I can't. So, yeah, I will be indulging in some of that in 2013.
5. Drink alcohol. I've had a drink here and there but it just doesn't really appeal to me. I want to go have 3-4 glasses of wine with some friends or a few beers with my husband. I guess number 5 should really say "get a little drunk"...it's been a rough year, I deserve it.
4. Go clothes shopping. I've lost all this weight but there is a part of me that is scared I will gain some back so I haven't bought much in the way of new clothes. Most of my pants are way too big and I walk around holding and pulling them up. I just want to prove to myself that I can maintain this weight for a few weeks after chemo before I start spending money on a whole new wardrobe.
3. Get to know Brooks. And have him get to know me. My mom, Rozanne, and Wes take care of him so much more than I do....sometimes I don't feel like his mom. Most of it has to do with my energy level but I think there is some sub-conscious stuff there too. Sometimes I'm still afraid I might die and I think I've kept myself at a distance from bonding too much so he wouldn't know the difference if suddenly I wasn't here. I'm not sure people not in my shoes will get that, but...whatever.
2. Doing a better job at work. My job is pretty stressful as it is but trying to do it in about 65-70 hours a pay period is super stressful. My staff have taken several things off my plate, which stresses me out more but I still don't get it all done and I have lots of guilt. Part of the reason I am blogging at 5:30 am is because I can't sleep because I'm stressed about work. So I'm looking forward to being full time again and getting rid of my chemo brain so I can be a good employee.
1. Getting s pedicure! It's been 5 months...'nuff said.
Four weeks and two days left!
10. Get organized. I am so exhausted and between work, doctor appointments and two kids I simply haven't had the time or energy to keep up with organizing the kids clothes or food, etc. Wes does a ton to help out but being organized is not one of his strengths and I feel like we are constantly wasting time looking for stuff. I can't wait until I can stay up past 8 pm and put some systems in place.
9. Exercise. Same reasons as above, zero energy and zero time. I've lost about 70 pounds since April but I think much of it was muscle. Also, after I'm done with chemo I won't be spending 10 days of each month too sick to eat so I need to start exercising so I don't gain it all back. I have no intentions of doing anything rigorous, I've run my marathons and biked my centuries, I'll be happy to just get 30 minutes walking on the treadmill and some weights each morning.
8. Eat mango. I tried that a couple of months ago and I seriously thought I was going to need to go to the ER. There are other fruits I miss too but mango is the big one.
7. Eat salad. Supposedly I can do this now, but I'm afraid (see above). I have had lettuce and tomato in small doses but I worry a whole salad would um, cause problems. And I've made it this far so...better safe than sorry.
6. Eat cashews and popcorn. These are a total no-no. It's one of those things that I really didn't think I'd care about but when you smell that popcorn, you want to get a handful, and I can't. So, yeah, I will be indulging in some of that in 2013.
5. Drink alcohol. I've had a drink here and there but it just doesn't really appeal to me. I want to go have 3-4 glasses of wine with some friends or a few beers with my husband. I guess number 5 should really say "get a little drunk"...it's been a rough year, I deserve it.
4. Go clothes shopping. I've lost all this weight but there is a part of me that is scared I will gain some back so I haven't bought much in the way of new clothes. Most of my pants are way too big and I walk around holding and pulling them up. I just want to prove to myself that I can maintain this weight for a few weeks after chemo before I start spending money on a whole new wardrobe.
3. Get to know Brooks. And have him get to know me. My mom, Rozanne, and Wes take care of him so much more than I do....sometimes I don't feel like his mom. Most of it has to do with my energy level but I think there is some sub-conscious stuff there too. Sometimes I'm still afraid I might die and I think I've kept myself at a distance from bonding too much so he wouldn't know the difference if suddenly I wasn't here. I'm not sure people not in my shoes will get that, but...whatever.
2. Doing a better job at work. My job is pretty stressful as it is but trying to do it in about 65-70 hours a pay period is super stressful. My staff have taken several things off my plate, which stresses me out more but I still don't get it all done and I have lots of guilt. Part of the reason I am blogging at 5:30 am is because I can't sleep because I'm stressed about work. So I'm looking forward to being full time again and getting rid of my chemo brain so I can be a good employee.
1. Getting s pedicure! It's been 5 months...'nuff said.
Four weeks and two days left!
Wednesday, November 14, 2012
9 down, 3 to go!!
Well, almost anyway. I'm in the chair (sweating my ass off) as I type this. I have about 45 minutes left. They actually decreased my dosage last cycle since I had been having such a rough time so that makes my time in the chair a little shorter and it made me feel a *little* better in between cycles this time. Well, considering how sick I had been after cycles 6 and 7, I guess I was a lot better, but it's still chemo and I still had some crummy days, but overall, it's better.
Obviously it's a little bittersweet to have my dose reduced since I really wanted to throw everything I could at this thing. I do not want to see cancer on my PET scan when this is all over and if I do, I know I'll wonder if I was stronger and could have tolerated the full dose, if the cancer would have been totally gone. But, I know that is not healthy thinking so I have to just push that out of my mind and focus on the fact that staying healthy in between cycles is probably just as critical to me beating cancer. The sicker I get, the better chance I have of having to postpone a cycle or quit all together so, it is what it is.
On a related note, my oncologist told me he didn't actually think I needed radiation after this. If that is the case, that means I really could be totally done with treatment in 2012 and fully move on in 2013. I start to tear up thinking about that!! He suggested I discuss it further with a radiation oncologist, but he didn' think that my particular case would require/benefit more from radiation. He added that since I had such a rough time with chemo, he really felt it wasn't worth it. Studies haven't shown there to be much benefit to radiation in cases similar to mine. But, I will get the second opinion to be sure. Obviously I want to be done as soon as possible but most importantly, I want to be done and not have to ever come back (well, except for my yearly "you still don't have any cancer" appointments).
I feel like there is a lot more I wanted to write about since I haven't felt well in so long. But....that's all I've got for now. Maybe I'll come up with more later.
Three more to go!!
Obviously it's a little bittersweet to have my dose reduced since I really wanted to throw everything I could at this thing. I do not want to see cancer on my PET scan when this is all over and if I do, I know I'll wonder if I was stronger and could have tolerated the full dose, if the cancer would have been totally gone. But, I know that is not healthy thinking so I have to just push that out of my mind and focus on the fact that staying healthy in between cycles is probably just as critical to me beating cancer. The sicker I get, the better chance I have of having to postpone a cycle or quit all together so, it is what it is.
On a related note, my oncologist told me he didn't actually think I needed radiation after this. If that is the case, that means I really could be totally done with treatment in 2012 and fully move on in 2013. I start to tear up thinking about that!! He suggested I discuss it further with a radiation oncologist, but he didn' think that my particular case would require/benefit more from radiation. He added that since I had such a rough time with chemo, he really felt it wasn't worth it. Studies haven't shown there to be much benefit to radiation in cases similar to mine. But, I will get the second opinion to be sure. Obviously I want to be done as soon as possible but most importantly, I want to be done and not have to ever come back (well, except for my yearly "you still don't have any cancer" appointments).
I feel like there is a lot more I wanted to write about since I haven't felt well in so long. But....that's all I've got for now. Maybe I'll come up with more later.
Three more to go!!
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