I finish my last radiation treatment on Friday-- yay!! Overall, radiation has not been bad, other than a few GI issues and being tired, it's just been an inconvenience where I have to get out of the house earlier than usual. But I will not miss it one bit. I continue to be annoyed by the clear difference in bedside manner between the male techs and females....and I don't know why they don't mix it up. Where I work, we always try to have a male and a female on the shift because we serve men and women at our shelters. We know that there are some issues that a man or a woman are going to feel more comfortable bringing to a person who shares their gender. Also, it is a lot more comfortable to have a woman do the inspections of the females rooms/dorms than to have a man do it. At radiation, there are two rooms and two sets of techs and it is almost always two women for one room and two men for the other, why don't they do one of each? I'm laying there with a g-d pillow case covering the lower half of my body...I get they can't always match people by gender 100% of the time but if they had mixed gender teams, it would possibly make patients feel a little more comfortable....and frankly, they might decrease their risk of having any false allegations brought against staff....maybe my line of work makes me go there un-necessarily and the rest of the world doesn't work that way, but I think it is always a good idea to minimize risk. It's interesting to me that this bothers me so much-- I went through 3 years of fertility treatments where I had male doctors being much more "up in my business" than in radiation and it was never an issue but, for some reason it annoys me now.
Anyway....I tried to schedule my PET scan this week and ran into a bit of an issue. Apparently you can't have a PET scan done until 6-8 weeks after radiation is done due to the inflammation. This really screws with the time line I have in my head of when I can close the book on this stinking nightmare. My doctor ordered a CT scan for me instead and "feels confident" that will be enough. I was reminded by the nurse that my doctor is "very cautious" so I can trust him on this. To which I reminded her that I have already had a clear CT scan in July (the week before I started chemo) and I need more reassurance. Frankly, if all they needed was a clear ct scan to tell me I'm cancer free, why the F did I go through 6 months of hell with chemo followed by more chemo and radiation?? So....I told her I needed to think about it but I'm pretty sure I'm going to wait for the PET scan. I am hoping that I can still meet with the colorectal surgeon and get my re-section surgery scheduled without much delay (you can't have the surgery until 6 weeks after radiation either). Basically I hope I can have the surgery scheduled for the end of April and have my PET scan in the middle of April....hopefully it will be all clear and we can proceed with the surgery. If it isn't all clear, we obviously just cancel the surgery. But who knows if my surgeon will go for that. In the meantime, I am going to try to schedule a family vacation. I am in desperate need of some warm weather and a break, plus it will help us focus on something else other than the what if's of the PET scan.
So that's all for now. It may be several weeks before I have any other news to share and hopefully that will be good news!
Wednesday, February 20, 2013
Tuesday, February 5, 2013
Radiation 101
As of tomorrow I will be half way done with radiation-- yay!! So, I figured I'd do a quick post outlining the details of how it works (well, I don't know how radiation works, but I will detail the process for me to get radiation).
First and foremost, I feel pretty good. Effects are supposed to be culmulative so I guess it could still go downhill, but it can['t go downhill for too long since I'm almost done.
So, every Monday through Friday I leave my house at about 6:55 for Fairfax Hospital where I have a standing 7:15 appointment. Radiation patients get a special parking space in the garage (not really sure why, but I'm not going to complain) which still feels painfully far away from the building since it has been so cold and there seems to be a bit of a wind tunnel created between the hospital and the garage. I take the elevator down to the basement and sign in on the computer at the front desk. Usually before I can even find an article to read in one of the hundreds of magazines they have, they call me back to get changed. I point out the number of magazines because I find it ironic that at the Oncologist office where I usually had to wait for about 30 minutes each time I went, they had like 4 magazines, none of which are as fun as the ones at the radiation office where I never wait. Anyway, I put my magazine down and walk over to where the changing rooms are and begin the ritual of knocking on the doors and opening them to see if anyone or anyone's clothes are already in them. I almost never find an empty room until the 4th and last door-- perhaps I will just begin there tomorrow. Writing this blog helps me see things that never would occur to me normally...So, I get changed, which means taking off everything below the waist (but keep on my socks and shoes) and put on a gown and go to the next waiting room (which has no magazines or cell phone reception) and wait. Usually I'm alone but sometimes there is this other guy in there, also with no pants on but dress socks pulled up to his knees. We wait, while two women leave the radiation area to head back to change. They both have pants on but no shirts under their gowns. Then a radiation therapist comes into the waiting room and instructs us to go back. Dressy knee high socks guy usually goes to the right and I usually go the left. When I get to the radiation station I need to tell them my name, date of birth and what area they are treating. At this point I also find out who my two therapists are that day. It is almost never the same exact team two days in a row. I always hope I will get women but usually I get two guys. I prefer women because 1) I have to lay on the table with nothing on from the waist down and 2) and more importantly to me, because the men NEVER offer me a blanket and it is freezing in the room. The women always get me warm blankets, usually without asking. I lay down on the table and the two therapists begin shimying me around to get me lined up. This process usually lasts for about 5 minutes and includes them pulling the sheet I'm laying on one way and then the other until they get it right. Somewhat humiliating while you are laying there commando. Then they leave the room and the big radiation arm rotates around me a few times shooting radiation in me and taking pictures for about 4 minutes and then I'm done. So yes, the shimying process lasts longer than the actual radiation. Most days of the week I just go back and change and leave. On Thursdays I see the doctor and sometimes they want me to see a dietition or social worker on other days. Basically they are all just checking in to see if I'm tolerating radiation ok (yes), maintaining my weight (yes and then some, unfortunately) and if I'm holding it all together mentally (usually).
So that is my radiation experience so far in a nutshell. Well, it is pretty detailed I guess, but there just isn't really that much to it. Like I've said, I feel pretty good. Getting a little more tired these days but nothing like with chemo...and I partially have to blame getting up so early and my sweet Brooksie boy who likes to see us overnight for some of that.
More to come soon....
First and foremost, I feel pretty good. Effects are supposed to be culmulative so I guess it could still go downhill, but it can['t go downhill for too long since I'm almost done.
So, every Monday through Friday I leave my house at about 6:55 for Fairfax Hospital where I have a standing 7:15 appointment. Radiation patients get a special parking space in the garage (not really sure why, but I'm not going to complain) which still feels painfully far away from the building since it has been so cold and there seems to be a bit of a wind tunnel created between the hospital and the garage. I take the elevator down to the basement and sign in on the computer at the front desk. Usually before I can even find an article to read in one of the hundreds of magazines they have, they call me back to get changed. I point out the number of magazines because I find it ironic that at the Oncologist office where I usually had to wait for about 30 minutes each time I went, they had like 4 magazines, none of which are as fun as the ones at the radiation office where I never wait. Anyway, I put my magazine down and walk over to where the changing rooms are and begin the ritual of knocking on the doors and opening them to see if anyone or anyone's clothes are already in them. I almost never find an empty room until the 4th and last door-- perhaps I will just begin there tomorrow. Writing this blog helps me see things that never would occur to me normally...So, I get changed, which means taking off everything below the waist (but keep on my socks and shoes) and put on a gown and go to the next waiting room (which has no magazines or cell phone reception) and wait. Usually I'm alone but sometimes there is this other guy in there, also with no pants on but dress socks pulled up to his knees. We wait, while two women leave the radiation area to head back to change. They both have pants on but no shirts under their gowns. Then a radiation therapist comes into the waiting room and instructs us to go back. Dressy knee high socks guy usually goes to the right and I usually go the left. When I get to the radiation station I need to tell them my name, date of birth and what area they are treating. At this point I also find out who my two therapists are that day. It is almost never the same exact team two days in a row. I always hope I will get women but usually I get two guys. I prefer women because 1) I have to lay on the table with nothing on from the waist down and 2) and more importantly to me, because the men NEVER offer me a blanket and it is freezing in the room. The women always get me warm blankets, usually without asking. I lay down on the table and the two therapists begin shimying me around to get me lined up. This process usually lasts for about 5 minutes and includes them pulling the sheet I'm laying on one way and then the other until they get it right. Somewhat humiliating while you are laying there commando. Then they leave the room and the big radiation arm rotates around me a few times shooting radiation in me and taking pictures for about 4 minutes and then I'm done. So yes, the shimying process lasts longer than the actual radiation. Most days of the week I just go back and change and leave. On Thursdays I see the doctor and sometimes they want me to see a dietition or social worker on other days. Basically they are all just checking in to see if I'm tolerating radiation ok (yes), maintaining my weight (yes and then some, unfortunately) and if I'm holding it all together mentally (usually).
So that is my radiation experience so far in a nutshell. Well, it is pretty detailed I guess, but there just isn't really that much to it. Like I've said, I feel pretty good. Getting a little more tired these days but nothing like with chemo...and I partially have to blame getting up so early and my sweet Brooksie boy who likes to see us overnight for some of that.
More to come soon....
Monday, January 21, 2013
Much Ado About Nothing
Well, radiation is a breeze. I realize the effects will be cumulative so I will probably be singing a different tune in a couple of days or weeks but-- so far, so good. I was on the table for about 7 minutes. Easy peasy. I do have some lower back (kidney?) pain, but I think that is from the chemo or residuals from having the stomach bug this weekend....or a combo of the two.
The chemo pills are enormous and I am worried about keeping them down after this stuff starts to build up as I have a terrible gag reflex. But, we'll see.
I do have to take a second to bitch about my neuropathy. My fingers and feet are so numb and it almost seems to be getting worse the further away I get from taking the Oxaliplatin that caused it to begin with. My oncologist said he hears that a lot but has a theory that people just think it is getting worse because the other symptoms get so much better. I think that is bullshit and people know when something is getting worse. It is so difficult to type or write and forget about doing something intricate like closing a Ziploc bag or trying to work a clasp on one of Garrison's 47 necklaces. Don't get me wrong, I will take this all day, every day over a lot of the other side effects I had...but it still stinks.
So that's all for now.
The chemo pills are enormous and I am worried about keeping them down after this stuff starts to build up as I have a terrible gag reflex. But, we'll see.
I do have to take a second to bitch about my neuropathy. My fingers and feet are so numb and it almost seems to be getting worse the further away I get from taking the Oxaliplatin that caused it to begin with. My oncologist said he hears that a lot but has a theory that people just think it is getting worse because the other symptoms get so much better. I think that is bullshit and people know when something is getting worse. It is so difficult to type or write and forget about doing something intricate like closing a Ziploc bag or trying to work a clasp on one of Garrison's 47 necklaces. Don't get me wrong, I will take this all day, every day over a lot of the other side effects I had...but it still stinks.
So that's all for now.
Sunday, January 20, 2013
The Good, the Bad, and the Funny
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.
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.
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.
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