Wednesday October 29, 2014
Today was my last day of the regular radiation treatments, and tomorrow would start three days of coned-down treatments. Boosters. That means they'd be targeting a smaller area more specifically the last three days of treatment.
It went by fast today. I fell asleep. I usually do fall asleep during the treatment even though it's very uncomfortable. But I've been so tired lately mostly from not getting a full night's sleep anymore. Lately I've been up more than usual throughout the night. Usually it's to pee, but lately my bowels have been irritated and making me have frequent bowel movements. Over the weekend I had diarrhea first thing in the morning Saturday and going on until the afternoon. Then I was completely back to normal. I've also been passing a lot more mucus than normal.
My bloody-pus balls have morphed into dark red stringy mucus blobs. It looks different than before. It looks really weird. If you've read my entire blog you know I overshare and get very detailed. So listen, this isn't pleasant but I had to do it to find out. One of these enormous mucus-passing episodes looked so odd and gross I thought for a second I may have passed a large quantity of parasitic worms. I'm not being sarcastic here! Really, I mean it. I was so concerned at the odd appearance and sudden change in my "bloody pus balls" that I'd been used to, that I had no choice but to reach into the toilet bowl with my hand and scoop out all the material to see what in the heck it really was. I placed it onto a dry washcloth. It was nothing but stringy-looking mucus. Just like a huge pile of the grossest looking snot you have ever seen. I know, that's gross. But hey, at least it wasn't really parasitic worms. (I decided not to try and take a photo of it. That's too gross. My advice is that if you have weird stuff coming out, just call and make an appointment! Don't assume it's normal). Yes, I threw the washcloth away.
The Phenazopyridine really does make you pee orange, like Kool-Aid orange. So far it's not really helping with the pain and discomfort. It might take a couple days. I've been having some mild pain in my tail-bone area on the inside, but it doesn't last long. Sometimes I get cramps at night when I lay on my side in bed. But other than that I feel fine.
Today the nurse told me that now that I'm nearly done with the radiation, I'll probably start feeling more fatigued in the next few weeks because of the build-up of radiation in my body. The pain should be lessening though. She also said my labs looked very good. They had been a little low but have now come up almost to normal. So that was good to hear. Oh, and I was told I should expect to see even more mucus-passing in the weeks to come. Yippie! (Not).
Wednesday, October 29, 2014
24th DAY OF RADIATION
Tuesday October 28, 2014
Today I had to do lab work again, a blood draw for a CBC (complete blood count). And since it's Tuesday they did x-rays again.
The nurse told me that I did have a few white cells in my urine but that it wasn't enough for an actual infection. So she gave me the prescription for the Phenazopyridine. It would be three pills a day. And they would turn my urine a deep orange color.
I also found out today that the hospital would resubmit one of my medical claims. I'd been trying for weeks to get them to fix one of my medical bills. My medical insurance is squirrely and not even Cigna fully knows how it is supposed to work. I've learned, and I always make sure I'm billed correctly.
I couldn't get the doctor's office or Cigna to understand why it was billed wrong, to verify it, nor fix it. I finally got in touch with a benefits analyst at the hospital to look into it, and they got back to me saying that I was correct, that the procedure would be "pulled into Tier 1", and that the claim would be resubmitted. It meant a difference of $180 to me. This is why I scrutinize my claims to make sure I'm being billed correctly. There are ALWAYS mistakes. In the past I've had all my claims audited just to look for erroneous charges. My oncologist's office had also overcharged me, saying I had a $75 copay that I later came to find out should have only been $20! Got that straightened out a couple weeks ago. Glad this one finally got fixed too.
Yay, small victory today!
Today I had to do lab work again, a blood draw for a CBC (complete blood count). And since it's Tuesday they did x-rays again.
The nurse told me that I did have a few white cells in my urine but that it wasn't enough for an actual infection. So she gave me the prescription for the Phenazopyridine. It would be three pills a day. And they would turn my urine a deep orange color.
I also found out today that the hospital would resubmit one of my medical claims. I'd been trying for weeks to get them to fix one of my medical bills. My medical insurance is squirrely and not even Cigna fully knows how it is supposed to work. I've learned, and I always make sure I'm billed correctly.
I couldn't get the doctor's office or Cigna to understand why it was billed wrong, to verify it, nor fix it. I finally got in touch with a benefits analyst at the hospital to look into it, and they got back to me saying that I was correct, that the procedure would be "pulled into Tier 1", and that the claim would be resubmitted. It meant a difference of $180 to me. This is why I scrutinize my claims to make sure I'm being billed correctly. There are ALWAYS mistakes. In the past I've had all my claims audited just to look for erroneous charges. My oncologist's office had also overcharged me, saying I had a $75 copay that I later came to find out should have only been $20! Got that straightened out a couple weeks ago. Glad this one finally got fixed too.
Yay, small victory today!
23rd DAY OF RADIATION
Monday October 27, 2014
Today they had me using their older radiation machine since they were doing a special procedure for someone else on the other machine. This machine looked the same but wasn't completely automated, so it meant that the techs had to do a few manual steps throughout the procedure. It didn't take too much longer than normal.
Then I met with the dietitian since it's Monday. As soon as she saw me she said, "How are you doing? You look great. You look like you always have so much energy." I told her that I just try my best to hold it together and do what I have to do. My weight today was 133.1. It's been like that. A little up, a little down, but it's basically in the same area. But again, she talked to me about trying not to lose more weight so that I can be strong for my surgery. It's inevitable I'll be losing weight during that time. She asked me, "Are you eating?"
If she knew what I eat and how much she'd be telling me not to eat that much and to stop eating what I'm eating. I admit I get a very rumbly tummy from the things I eat, but sometimes it's worth it. I figure, I can eat now. I won't be able to eat like this at surgery time and probably not for several weeks after. I have no idea what to expect with having a colostomy bag. I imagine I will find out quickly what foods to avoid!
After meeting with the dietitian I saw the nurse who takes my pulse, temp, and blood pressure once a week, usually on Wednesdays. But this week my radiation doc is going on vacation so we were doing these things today.
Then I got to see my radiation doc. He said I'm doing really very well for how far into the treatment I am. I told him I'd been having some pain in my urethra and thought I may have a urinary tract infection, so he had me give a urine sample. He said if it is an infection he would give me an antibiotic, but if it wasn't then he would give me Phenazopyridine which would calm the irritation of my urinary tract. It's very common with radiation in the area of the colon for it to irritate the urinary tract. He also told me that next Monday, November 3, would be my final day of chemo and radiation. Wow, it has really gone by fast. WEIGHT 133.1
Today they had me using their older radiation machine since they were doing a special procedure for someone else on the other machine. This machine looked the same but wasn't completely automated, so it meant that the techs had to do a few manual steps throughout the procedure. It didn't take too much longer than normal.
Then I met with the dietitian since it's Monday. As soon as she saw me she said, "How are you doing? You look great. You look like you always have so much energy." I told her that I just try my best to hold it together and do what I have to do. My weight today was 133.1. It's been like that. A little up, a little down, but it's basically in the same area. But again, she talked to me about trying not to lose more weight so that I can be strong for my surgery. It's inevitable I'll be losing weight during that time. She asked me, "Are you eating?"
If she knew what I eat and how much she'd be telling me not to eat that much and to stop eating what I'm eating. I admit I get a very rumbly tummy from the things I eat, but sometimes it's worth it. I figure, I can eat now. I won't be able to eat like this at surgery time and probably not for several weeks after. I have no idea what to expect with having a colostomy bag. I imagine I will find out quickly what foods to avoid!
After meeting with the dietitian I saw the nurse who takes my pulse, temp, and blood pressure once a week, usually on Wednesdays. But this week my radiation doc is going on vacation so we were doing these things today.
Then I got to see my radiation doc. He said I'm doing really very well for how far into the treatment I am. I told him I'd been having some pain in my urethra and thought I may have a urinary tract infection, so he had me give a urine sample. He said if it is an infection he would give me an antibiotic, but if it wasn't then he would give me Phenazopyridine which would calm the irritation of my urinary tract. It's very common with radiation in the area of the colon for it to irritate the urinary tract. He also told me that next Monday, November 3, would be my final day of chemo and radiation. Wow, it has really gone by fast. WEIGHT 133.1
21st DAY OF RADIATION
Thursday October 23, 2014
Nothing very eventful today. I'm nearing the end of my chemo and radiation treatment. 28 doses will be the total. The end of phase I. The next phase will be when I go in for surgery. I'm only a little bit nervous about that but I know it's completely necessary.
I remember a couple years ago when I finally got around to planning having carpal tunnel surgery. I'd put it off as long as I could. I knew I would take a small financial hit for it, being on short-term disability and getting less pay, but I had planned for it so it was ok. Then a week after my surgery we learned that my son David would need surgery! Ugh! Why do things always work out that way? We discovered he had a pilonidal cyst that we caught fairly early, but surgery was necessary and urgent. Another medical financial hit.
The following year, last year, I swore I wouldn't have another surgery nor anything big medically, but just to be on the safe side I made good choices for my medical coverage. Then I got the appendicitis. Ugh! Another surgery. After that I told myself, Ok, that's gotta be it for a while. I'm young and healthy and I need a break from the big stuff. Then this year comes along. Yep, I got cancer. OMG! It's frustrating not being in power of your health in the grand scheme of things. I was only 43, didn't know I had a polyp for God only knows how long, and that one polyp decided to turn into cancer. I wonder what the odds are on that. I wish our healthcare system was actually more focused on preventative maintenance and medicine. I think colonoscopies should be moved from age 50 to 40. And mammograms should be at 30. Maybe the odds are greater that polyps turn into cancer more after the age of 50, but because it can happen younger than that, that's enough reason to do checks earlier! That's what preventative means!
I better not come up with any more diseases or surgeries next year, so help me. If they keep removing body parts from me, soon there won't be anything left :) WEIGHT 132.8
Saturday, October 25, 2014
20th DAY OF RADIATION
Wednesday October 22, 2014
My period started last Sunday, and on last Wednesday when I saw my radiation oncologist doctor I mentioned that my period was very light, when typically it's quite heavy the first few days. He said that the radiation would sterilize me and lead me into an early menopause, so he wasn't surprised. I remember him mentioning that the first day we met, but I could tell that now with him bringing it up again he was trying to be sensitive to how that might make me feel. I reassured him that I couldn't care less. "Hey, I've done my part. I've had my babies. I'm done producing humans!" Then my period went on to continue for 9 days! It finally stopped yesterday.
The sloughing of dead tumor material seems to be coming more frequently. This morning when I got up for work I could tell that I needed to pass some. My gut hurts a certain way and I can tell that tissue is falling off. I have to push as if having a bowel movement to push it out, and it's only tumor material (not feces) that comes out. Sometimes it's only a few small pebble sized blobs, but sometimes it's as much as half a handful of material. I realize now that this material is what I was noticing coming out of me since last December, what I called the "bloody pus balls". Back then they were more white pus-like blobs with a little blood inside them. Now they are more completely reddish-pink blobs, but I can tell they have the same material makeup. Now I know what they are---the sloughing off of dead tissue from the chemo/radiation treatment.
Back as far as 9 months ago I suspected this material was some kind of "sloughing off" of something but I never realized nor suspected cancer. Maybe I'll consider somehow getting a photo of it to post on here. Not to be gross, but to be informative. Honestly. If there is someone out there who could see this material and who realizes they are seeing themselves passing the same kind of thing, it would be extremely beneficial in informing them of what they have and to seek medical attention sooner than I did.
I can't tell you how many Google search attempts I made trying to find out what in the hell was coming out of me. For all my descriptive combinations of attempts, the only information on the Internet I could find was along the lines of "Blood in your stools may be a sign of cancer." Well that was nonhelpful because I didn't have blood in my stools, not that I could see. I had these weird blobs of bloody-pus-like material coming out of me. A photo of exactly what I was experiencing was what I was looking for. Imagine a fluffy homemade dumpling that is floating in broth, and the edges look a little fraying, with a red tinge in the middle. These were coming out periodically for months, about the size of a garbanzo bean.
Anyway, so it's not alarming to be passing all this dead tissue now. It means my treatment is doing its job. I suppose the reason it was sloughing off months ago is just because tissue inside me was being destroyed by the cancer and falling off. Now the radiation is causing it to slough off even faster. That's great! I'm interested to see how much of the tumor (or how little of the tumor) is left after my treatment and before surgery. I don't know if they'll take another look inside me before surgery or just wait til surgery to see what's left in there. Someone asked me if the tumor shrinks enough to where it's gone, does it mean I still have to have surgery. The answer is, I still need surgery. And I still want surgery! You can't see every single cell, and you don't want anything to be missed that could start growing again.
I still have the dry-mouth side effect from my chemo pills. But after I drink a glass or two of water I'm fine. I just need to remember to do that several times a day. I usually don't remember until I feel the dry mouth.
The Aquaphor isn't helping much. I like Chap Stick more. My dry, cracked finger tips are improving because I'm constantly putting lip balm on them. I can tell now that this side effect is from the chemo and not just because of the weather or from last week's cleaning frenzy. My radiation doc looked at my fingers and said it's definitely from the Xeloda. The skin on several of my fingertips has peeled off several layers down to very red, tender skin that sometimes bleeds. It's extremely sensitive and painful to the touch. If I let them go without the lip balm, the edges of the peeled skin starts to dry and get hard, you're temped to want to peel it off, but that causes even more pain and worsening.
So what I've been doing is using an emery board to swiftly shave off that dry, stiff skin to where the surface of my fingertips is smooth----and yes it really hurts to do that, but it's worth it. And then I apply the lip balm. It means I can't touch anything unless I don't mind getting lip balm on everything I touch (keyboard, cell phone, etc) but I just apply it several times a day when I can sit and not have to be doing anything that requires fingertips. I do things differently to accommodate this. Like, you can drive with keeping your fingers pointed in the air. And I use a stylus on my cell phone. But the keyboard...I have to use my tips for that. Typing is slower because it really hurts. But if I have to mess up the balm or wash my hands after doing something, then as soon as I'm done I apply the balm again. It works incredibly well. The deep cracks are healing. The new skin is building up and being less sensitive. I'm not bleeding anymore. WEIGHT 134.6
My period started last Sunday, and on last Wednesday when I saw my radiation oncologist doctor I mentioned that my period was very light, when typically it's quite heavy the first few days. He said that the radiation would sterilize me and lead me into an early menopause, so he wasn't surprised. I remember him mentioning that the first day we met, but I could tell that now with him bringing it up again he was trying to be sensitive to how that might make me feel. I reassured him that I couldn't care less. "Hey, I've done my part. I've had my babies. I'm done producing humans!" Then my period went on to continue for 9 days! It finally stopped yesterday.
The sloughing of dead tumor material seems to be coming more frequently. This morning when I got up for work I could tell that I needed to pass some. My gut hurts a certain way and I can tell that tissue is falling off. I have to push as if having a bowel movement to push it out, and it's only tumor material (not feces) that comes out. Sometimes it's only a few small pebble sized blobs, but sometimes it's as much as half a handful of material. I realize now that this material is what I was noticing coming out of me since last December, what I called the "bloody pus balls". Back then they were more white pus-like blobs with a little blood inside them. Now they are more completely reddish-pink blobs, but I can tell they have the same material makeup. Now I know what they are---the sloughing off of dead tissue from the chemo/radiation treatment.
Back as far as 9 months ago I suspected this material was some kind of "sloughing off" of something but I never realized nor suspected cancer. Maybe I'll consider somehow getting a photo of it to post on here. Not to be gross, but to be informative. Honestly. If there is someone out there who could see this material and who realizes they are seeing themselves passing the same kind of thing, it would be extremely beneficial in informing them of what they have and to seek medical attention sooner than I did.
I can't tell you how many Google search attempts I made trying to find out what in the hell was coming out of me. For all my descriptive combinations of attempts, the only information on the Internet I could find was along the lines of "Blood in your stools may be a sign of cancer." Well that was nonhelpful because I didn't have blood in my stools, not that I could see. I had these weird blobs of bloody-pus-like material coming out of me. A photo of exactly what I was experiencing was what I was looking for. Imagine a fluffy homemade dumpling that is floating in broth, and the edges look a little fraying, with a red tinge in the middle. These were coming out periodically for months, about the size of a garbanzo bean.
Anyway, so it's not alarming to be passing all this dead tissue now. It means my treatment is doing its job. I suppose the reason it was sloughing off months ago is just because tissue inside me was being destroyed by the cancer and falling off. Now the radiation is causing it to slough off even faster. That's great! I'm interested to see how much of the tumor (or how little of the tumor) is left after my treatment and before surgery. I don't know if they'll take another look inside me before surgery or just wait til surgery to see what's left in there. Someone asked me if the tumor shrinks enough to where it's gone, does it mean I still have to have surgery. The answer is, I still need surgery. And I still want surgery! You can't see every single cell, and you don't want anything to be missed that could start growing again.
I still have the dry-mouth side effect from my chemo pills. But after I drink a glass or two of water I'm fine. I just need to remember to do that several times a day. I usually don't remember until I feel the dry mouth.
The Aquaphor isn't helping much. I like Chap Stick more. My dry, cracked finger tips are improving because I'm constantly putting lip balm on them. I can tell now that this side effect is from the chemo and not just because of the weather or from last week's cleaning frenzy. My radiation doc looked at my fingers and said it's definitely from the Xeloda. The skin on several of my fingertips has peeled off several layers down to very red, tender skin that sometimes bleeds. It's extremely sensitive and painful to the touch. If I let them go without the lip balm, the edges of the peeled skin starts to dry and get hard, you're temped to want to peel it off, but that causes even more pain and worsening.
So what I've been doing is using an emery board to swiftly shave off that dry, stiff skin to where the surface of my fingertips is smooth----and yes it really hurts to do that, but it's worth it. And then I apply the lip balm. It means I can't touch anything unless I don't mind getting lip balm on everything I touch (keyboard, cell phone, etc) but I just apply it several times a day when I can sit and not have to be doing anything that requires fingertips. I do things differently to accommodate this. Like, you can drive with keeping your fingers pointed in the air. And I use a stylus on my cell phone. But the keyboard...I have to use my tips for that. Typing is slower because it really hurts. But if I have to mess up the balm or wash my hands after doing something, then as soon as I'm done I apply the balm again. It works incredibly well. The deep cracks are healing. The new skin is building up and being less sensitive. I'm not bleeding anymore. WEIGHT 134.6
19th DAY OF RADIATION
Tuesday October 21, 2014
Tuesdays I go in to the lab for blood work. And at my radiation appointment I get x-rays. WEIGHT 134.6
Tuesdays I go in to the lab for blood work. And at my radiation appointment I get x-rays. WEIGHT 134.6
18th DAY OF RADIATION
Monday October 20, 2014
The gals at my radiation oncology center make my day, and I only see them a few minutes. Everyone is so fun and friendly and we joke a lot. The routine has become so normal for me that it's hardly a big deal anymore going in for it, except that it's an interruption in my day especially when it's my day off work. But I'm no longer nervous. The hard table isn't annoying anymore because the 15 or 20 minutes I'm in there is so routine that it just flies by. I mostly just focus on the music playing on a portable stereo they have in the room. About three to three and a half songs and my radiation treatment is done.
My dietitian reminded me to be drinking a lot of water to stay hydrated. I mentioned that I've noticed some pain with urination and it feels like I can't get it to come out. She said if it continues then I need to mention it to the nurses tomorrow. She also keeps mentioning that she doesn't want me losing any more weight so that I can be strong for my surgery. I'll be losing enough weight from the surgery, so she doesn't want me to be underweight then. I haven't been trying to lose weight, it's just from how busy I've been, on my feet constantly for several days now trying to get everything moved and get the house cleaned. Now I'm living out of boxes until everything gets unpacked and in place, so it's been pretty hectic lately. I'm feeling so frazzled. But I'm eating enough. When things settle down I'll better be able to take her advice and eat little snacks throughout the day rather than a big meal for dinner. WEIGHT 134.8
The gals at my radiation oncology center make my day, and I only see them a few minutes. Everyone is so fun and friendly and we joke a lot. The routine has become so normal for me that it's hardly a big deal anymore going in for it, except that it's an interruption in my day especially when it's my day off work. But I'm no longer nervous. The hard table isn't annoying anymore because the 15 or 20 minutes I'm in there is so routine that it just flies by. I mostly just focus on the music playing on a portable stereo they have in the room. About three to three and a half songs and my radiation treatment is done.
My dietitian reminded me to be drinking a lot of water to stay hydrated. I mentioned that I've noticed some pain with urination and it feels like I can't get it to come out. She said if it continues then I need to mention it to the nurses tomorrow. She also keeps mentioning that she doesn't want me losing any more weight so that I can be strong for my surgery. I'll be losing enough weight from the surgery, so she doesn't want me to be underweight then. I haven't been trying to lose weight, it's just from how busy I've been, on my feet constantly for several days now trying to get everything moved and get the house cleaned. Now I'm living out of boxes until everything gets unpacked and in place, so it's been pretty hectic lately. I'm feeling so frazzled. But I'm eating enough. When things settle down I'll better be able to take her advice and eat little snacks throughout the day rather than a big meal for dinner. WEIGHT 134.8
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