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
Showing posts with label tumor. Show all posts
Showing posts with label tumor. Show all posts
Saturday, October 25, 2014
Friday, September 26, 2014
FIRST RADIATION DOSE!
Today is Thursday September 25, 2014. This morning I had an appointment with the surgeon who would be doing my surgery. Mom wanted to go with me so I picked her up and then we headed to Golden. He went over everything and it was all pretty much the same as what I’d already heard. He explained that I’d need a temporary bag between anywhere from a few weeks to 6 months, but that he was certain he’d be able to reverse it and reattach my colon to my rectum when the time came. He said, “I think your tumor is high enough that I can do that, but I just want to check and make sure that I know exactly where it is.” I thought he would be looking at my previous scans or something but then he said, “So do you mind if I take a look with the sigmoidoscope?”
A surprise sigmoidoscopy is worse than a pop quiz. But I’m always a good patient, so I didn’t mind. I had to go into another room where they had a short table with a knee rest, and a large TV monitor next to it, with a long black tube hanging beside it. The nurse showed me how to position myself on the table after I have my pants and undies off. Then she got the doc. While the two of them were getting ready to insert the camera I said, “Be careful of my hemorrhoids back there,” and the doctor said, “Oh don’t worry, I see them, I’ll be careful.” It didn’t hurt but was just a little weird. Then it got uncomfortable when he blew air into my colon. I watched the monitor to see what my tumor looked like, but it wasn’t really easy to make heads or tails out of anything. As long as the doctor knows what he’s seeing that’s all that matters. He said he saw what he needed and that everything looked good for his plans for surgery. Before we left he gave me his cell phone number and told me to text him any time with any questions I might have.
After that I drove Mom home and then went home to wash up for my radiation appointment. I wasn’t messy, and in fact I could tell on the monitor how clean my colon still was. But they used gel to make insertion easier and even though I had wiped up in the office and even used the bathroom afterwards, I still felt like washing up. Then I had to hurry to the hospital, Lutheran Medical Center, for my first radiation dose. I made it on time but they were running late, so I sat and did the jigsaw puzzle in the patient waiting room. Someone had started the puzzle from the middle pieces, leaving big islands of puzzle done with hardly any of the edges started. That drives me nuts. So I got a good portion of the edge completed before it was my turn to be called in.
There wasn’t anything special about the radiation dose. I can’t really see much except out of the corner of my eyes. The machine has arms on the side that come out around me, and as I lay there I can hear it reposition itself around me, turning and whirring. My tush again was exposed and I could feel a breeze in the room. I think the only thing I felt from the radiation dose was a light warmth on my tush. During one of the machine’s repositioning it bumped into my left elbow, and afterwards I let the nurse know. She said they could move it a little for me next time. Weight 137.9.
A surprise sigmoidoscopy is worse than a pop quiz. But I’m always a good patient, so I didn’t mind. I had to go into another room where they had a short table with a knee rest, and a large TV monitor next to it, with a long black tube hanging beside it. The nurse showed me how to position myself on the table after I have my pants and undies off. Then she got the doc. While the two of them were getting ready to insert the camera I said, “Be careful of my hemorrhoids back there,” and the doctor said, “Oh don’t worry, I see them, I’ll be careful.” It didn’t hurt but was just a little weird. Then it got uncomfortable when he blew air into my colon. I watched the monitor to see what my tumor looked like, but it wasn’t really easy to make heads or tails out of anything. As long as the doctor knows what he’s seeing that’s all that matters. He said he saw what he needed and that everything looked good for his plans for surgery. Before we left he gave me his cell phone number and told me to text him any time with any questions I might have.
After that I drove Mom home and then went home to wash up for my radiation appointment. I wasn’t messy, and in fact I could tell on the monitor how clean my colon still was. But they used gel to make insertion easier and even though I had wiped up in the office and even used the bathroom afterwards, I still felt like washing up. Then I had to hurry to the hospital, Lutheran Medical Center, for my first radiation dose. I made it on time but they were running late, so I sat and did the jigsaw puzzle in the patient waiting room. Someone had started the puzzle from the middle pieces, leaving big islands of puzzle done with hardly any of the edges started. That drives me nuts. So I got a good portion of the edge completed before it was my turn to be called in.
There wasn’t anything special about the radiation dose. I can’t really see much except out of the corner of my eyes. The machine has arms on the side that come out around me, and as I lay there I can hear it reposition itself around me, turning and whirring. My tush again was exposed and I could feel a breeze in the room. I think the only thing I felt from the radiation dose was a light warmth on my tush. During one of the machine’s repositioning it bumped into my left elbow, and afterwards I let the nurse know. She said they could move it a little for me next time. Weight 137.9.
Monday, September 22, 2014
STAGING
Coming home from the hospital after finding out I have cancer was devastating. I felt so sorry to myself because I hadn't gotten myself looked at months ago. And sorry to my kids and my family because I felt like I had let everybody down. But I had to keep my head on straight. Had to start making phone calls, to an oncologist, to a surgeon, to my insurance company, to my supervisor, to family and friends. I had to get things moving, had to take charge of this thing. I had no idea my son was sitting at his desk crying while listening to me on the phone. I thought he was just focused on his homework My daughter cried openly the rest of that first day right up until bedtime.
I hadn't eaten much in the days leading up to the colonoscopy because of the amount of pain I was in. Eating just made it worse. By now I was so hungry I didn't care about pain, I just wanted to eat. I decided to make a big pot of my chicken noodle soup because I thought it would be easy on my system and it just sounded good because some cooler weather was coming. Later that afternoon I got a call from the office of the gastroenterologist who did my colonoscopy. The woman said, "Have you eaten anything yet?" I said, "No but I'm getting ready to." And she said, "Don't eat. We can get you in for an ultrasound tomorrow but you can't eat. And you'll have to do one Fleet enema before you come in."
I remember the tears coming again at the thought of being told I couldn't eat still, the one little comfort I was so looking forward to. This was my 2nd full day of nothing but fluids and I felt miserable. If you know me at all you know I love to eat. I was so hungry and weak. I think my electrolytes were off balance or something because my muscles and joints were in pain and I was shaky. But I stayed on the liquid diet and I did the Fleet enema, and let me just say that it's really not easy to do one of those yourself. Fortunately I was already completely empty with a squeaky clean colon to begin with...but if I hadn't been it would have been messy.
So now it's 1:30 on my third day of a liquid diet and I was going in for this ultrasound. I was surprised when I got there to find out it wasn't just a regular ultrasound, it was an endoscopic ultrasound and they would be giving me propofol again. One moment I felt myself falling asleep and the next I was waking up.
They staged it as T3, N0, M0 which meant the tumor size was a 3, but no nodes were involved and no metastasis. I remember feeling relief just knowing there were no nodes involved yet which in my mind meant I had a good chance of fighting it.
Waking up this 2nd day from the propofol left me so groggy, wobbly, and slurring my speech. I wasn't able to come out of it fully until later that evening. (I was so weak my brother had to help me walk to the car, and later at home my son told me not to take the stairs by myself). My mom, my brother, and me went to pick up my son from college, then they took me home. I remember getting into my pajamas, heating up a bowl of my homemade chicken noodle soup, and sitting down for that first bite of food in three days. It was Heaven.
I hadn't eaten much in the days leading up to the colonoscopy because of the amount of pain I was in. Eating just made it worse. By now I was so hungry I didn't care about pain, I just wanted to eat. I decided to make a big pot of my chicken noodle soup because I thought it would be easy on my system and it just sounded good because some cooler weather was coming. Later that afternoon I got a call from the office of the gastroenterologist who did my colonoscopy. The woman said, "Have you eaten anything yet?" I said, "No but I'm getting ready to." And she said, "Don't eat. We can get you in for an ultrasound tomorrow but you can't eat. And you'll have to do one Fleet enema before you come in."
I remember the tears coming again at the thought of being told I couldn't eat still, the one little comfort I was so looking forward to. This was my 2nd full day of nothing but fluids and I felt miserable. If you know me at all you know I love to eat. I was so hungry and weak. I think my electrolytes were off balance or something because my muscles and joints were in pain and I was shaky. But I stayed on the liquid diet and I did the Fleet enema, and let me just say that it's really not easy to do one of those yourself. Fortunately I was already completely empty with a squeaky clean colon to begin with...but if I hadn't been it would have been messy.
So now it's 1:30 on my third day of a liquid diet and I was going in for this ultrasound. I was surprised when I got there to find out it wasn't just a regular ultrasound, it was an endoscopic ultrasound and they would be giving me propofol again. One moment I felt myself falling asleep and the next I was waking up.
They staged it as T3, N0, M0 which meant the tumor size was a 3, but no nodes were involved and no metastasis. I remember feeling relief just knowing there were no nodes involved yet which in my mind meant I had a good chance of fighting it.
Waking up this 2nd day from the propofol left me so groggy, wobbly, and slurring my speech. I wasn't able to come out of it fully until later that evening. (I was so weak my brother had to help me walk to the car, and later at home my son told me not to take the stairs by myself). My mom, my brother, and me went to pick up my son from college, then they took me home. I remember getting into my pajamas, heating up a bowl of my homemade chicken noodle soup, and sitting down for that first bite of food in three days. It was Heaven.
Sunday, September 21, 2014
FINDING OUT I HAVE COLORECTAL CANCER
On September 10, 2014 I was diagnosed with colorectal cancer. I'm coping surprisingly well but I'm still in shock. It's not that I now identify myself as a cancer patient as if my whole identity has become that, but let's face it, I'm a cancer patient. Just to think it is shocking enough, but when I hear myself saying it out loud I feel like I'm lying or playing a joke because it just doesn't seem real. I have always had to balance being too optimistic or too pessimistic when it comes to serious matters. Neither is good. So now that I'm dealing with one of my most dreaded fears having come into being, my mindset right now is keeping that balance in check by being realistic and focusing on what needs to be done. So if you see me burst into tears while doing everyday normal things, it's the shock and disbelief hitting me again.
Looking back I can now see all the symptoms I've been experiencing the past year as being due to the cancer. I started having rectal bleeding around the spring of 2013, just a few drops on the toilet paper, bright red blood. I assumed it was hemorrhoids, which I knew that I had, so I wasn't worried. After having an appendectomy in July 2013, I attributed all my new symptoms to recovering from that surgery since I'm a type 1 diabetic and it takes me a lot longer than normal to heal. Even a mosquito bite takes months to heal, so I wasn't too surprised that my digestive and bowel habits had changed, seemed to slow down. About 5 or 6 months after the appendectomy I noticed that the rectal bleeding had changed now to being a few drops of blood inside what I call pus balls. I was concerned about it, but then in the beginning of 2014 it stopped for a couple months, so I stopped worrying about it. By the spring it started again. But my ex was taking me back to court to lower child support, my son was graduating from high school, and my mom was about to have a hip replacement. With all the stress going on in my life I decided to wait until my next doctor appointment in July. I told her I'd like to be looked at in there to see if this was hemorrhoids or something else, so she referred me to a specialist. The specialist had me take suppositories which didn't clear up the blood-filled pus balls, so she suggested I get a colonoscopy. At this point I was definitely worried.
By this time it was now mid August, 2014, and after spending 5 days dealing with insurance and trying to figure out where I could get a colonoscopy within my coverage, I was so worried I didn't know what to do with myself. But I finally got an appointment for two weeks later. In those two weeks everything started to change. I began having sharp pains in various places in my low abdominal area. I sometimes felt a tight squeezing and dull pain in the area of my kidneys and ureters and perineum. I lost my appetite. Sometimes I was nauseated, and that's rare for me. None of these symptoms made sense and I couldn't figure out what could be wrong with me. I knew it had to be something with my colon, but I figured I was having some kind of inflammatory bowel disease or something like that. When the pain was most pronounced I could pass a rather large amount of this bloody pus, which was now no longer little balls but nearly a handful. Yes, I was extremely worried now.
Finally time for my colonoscopy prep. It was hard for me, being a diabetic, but I followed the prep to a tee and was more than happy to get this colonoscopy out of the way. I chose to have the propofol so that I wouldn't be awake and worry through the whole thing, and I expected to wake up and be told I had a blockage, or abscess, or fistula or something. But when they woke me up and the doc came in he said he found a very large tumor in my sigmoid colon starting to go into my rectum and that it looks malignant. "You have colon cancer," he said. I was in so much shock hearing that. I never in a million years expected it to be cancer. I cried. I was so scared just at the thought of not knowing how bad or how far it had spread. My mom had taken me to the hospital for the colonoscopy since I had the propofol and wasn't supposed to drive. On the ride home all I could think about was telling this awful news to my kids and knowing how sad and upset they would be. My daughter turned 17 in August and my son will be 19 in November. All I could think about was that I don't want to die, I don't want to leave my kids this soon, and that I have too many things to do in my life. I was just so afraid that this was the end for me.
Looking back I can now see all the symptoms I've been experiencing the past year as being due to the cancer. I started having rectal bleeding around the spring of 2013, just a few drops on the toilet paper, bright red blood. I assumed it was hemorrhoids, which I knew that I had, so I wasn't worried. After having an appendectomy in July 2013, I attributed all my new symptoms to recovering from that surgery since I'm a type 1 diabetic and it takes me a lot longer than normal to heal. Even a mosquito bite takes months to heal, so I wasn't too surprised that my digestive and bowel habits had changed, seemed to slow down. About 5 or 6 months after the appendectomy I noticed that the rectal bleeding had changed now to being a few drops of blood inside what I call pus balls. I was concerned about it, but then in the beginning of 2014 it stopped for a couple months, so I stopped worrying about it. By the spring it started again. But my ex was taking me back to court to lower child support, my son was graduating from high school, and my mom was about to have a hip replacement. With all the stress going on in my life I decided to wait until my next doctor appointment in July. I told her I'd like to be looked at in there to see if this was hemorrhoids or something else, so she referred me to a specialist. The specialist had me take suppositories which didn't clear up the blood-filled pus balls, so she suggested I get a colonoscopy. At this point I was definitely worried.
By this time it was now mid August, 2014, and after spending 5 days dealing with insurance and trying to figure out where I could get a colonoscopy within my coverage, I was so worried I didn't know what to do with myself. But I finally got an appointment for two weeks later. In those two weeks everything started to change. I began having sharp pains in various places in my low abdominal area. I sometimes felt a tight squeezing and dull pain in the area of my kidneys and ureters and perineum. I lost my appetite. Sometimes I was nauseated, and that's rare for me. None of these symptoms made sense and I couldn't figure out what could be wrong with me. I knew it had to be something with my colon, but I figured I was having some kind of inflammatory bowel disease or something like that. When the pain was most pronounced I could pass a rather large amount of this bloody pus, which was now no longer little balls but nearly a handful. Yes, I was extremely worried now.
Finally time for my colonoscopy prep. It was hard for me, being a diabetic, but I followed the prep to a tee and was more than happy to get this colonoscopy out of the way. I chose to have the propofol so that I wouldn't be awake and worry through the whole thing, and I expected to wake up and be told I had a blockage, or abscess, or fistula or something. But when they woke me up and the doc came in he said he found a very large tumor in my sigmoid colon starting to go into my rectum and that it looks malignant. "You have colon cancer," he said. I was in so much shock hearing that. I never in a million years expected it to be cancer. I cried. I was so scared just at the thought of not knowing how bad or how far it had spread. My mom had taken me to the hospital for the colonoscopy since I had the propofol and wasn't supposed to drive. On the ride home all I could think about was telling this awful news to my kids and knowing how sad and upset they would be. My daughter turned 17 in August and my son will be 19 in November. All I could think about was that I don't want to die, I don't want to leave my kids this soon, and that I have too many things to do in my life. I was just so afraid that this was the end for me.
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