My mom often tells me I'm a worrier and to be honest she is probably right. Lately my worrying has caused me to lose sleep. I keep thinking about the surgery and what may come. I know the surgery is weeks away and I shouldn't be so obsessed with it or the aftermath, but telling yourself not to worry and actually not worrying are two different things entirely. Now that radiation is behind me all I can do is think about the surgery.
On Monday I met with my surgeon. My discussion with her took several days to set in. I told Dennis about it that night and even he had to stop me and tell me he needed some time to digest the information. He is very supportive, but I know it is hard for him to hear what they are going to be doing to me.
Here is what the doc said. In mid March I will come back and see her so she can get an idea of how the radiation affected the tumor. Based on the tumors previous location she wouldn't be able to the sphincter muscles thus a permanent colostomy would be required, otherwise I wouldn't have any control over my bowels. If the tumor shrank and moved upward there is a chance they would be able to resect the tumor (pretty much remove my whole rectum) and attach my colon to my anus. I know fun terms! However this possibility comes with a few risks. To start off when they do a resection, any resection, they need positive margins. I believe my doc told me 2 cm. My doctor says they can cheat the margins sometimes (say the go for 1cm instead of 2cm) but that will increase my chances of a local recurrence. Yeah, that is the last thing that I want, to have to deal with this a second time around! To ensure positive margins are met, they take a slice and have a pathologist call it on the spot. If it is positive, they keep cutting until they get a clean slice. Once the slice shows no evidence of disease (NED) they finish up the procedure. After the surgery the slice is sent for further testing and should come back in a few days with a final call. Now if the final testing comes back NED than I'm good and can proceed on. If the final results come back positive for cancer than they will have to perform another surgery and I will than end up with a permanent colostomy anyways. The second surgery would need to be done within days of the first so scar tissue doesn't have a chance to set in. If they are unable to do the surgery within 7-10 days of the first than they will have to wait another 4-6 weeks to go back in, thus pushing back the rest of my treatment.
Ok with all that information you may be thinking to yourself, think positive Melissa it will all work out! Here is my experience though. When my husband had his melanoma resected from his arm it took not 1 surgery to remove everything but 3. He would get home from the hospital (his was an outpatient procedure) and within 3-4 days we would get a call from his surgeon saying that they had not met the positive margins and they had to go back in twice.
My surgery will be inpatient since it involves some major organs. I will be in the hospital for about 7-10 days, obviously if I have a second surgery or any complications that time will be lengthened. I wish I could just check out for the next couple months. I've had my fair share of surgeries in my life, but this one is by far the most worrisome to me. I don't feel like I'm in control of this on any level. It has to happen, that I know! Somehow I need to come to terms with what is about to happen.
Friday, February 17, 2012
Saturday, February 11, 2012
Weekends
So the weekend is here and I should be excited. The hubby and the kids are home and I am surrounded by love and smiles. Only thing is that I always feel awful on the weekends. I don't know what it is; my guess is it is all the meds catching up with me. These 2 days are the only days in the week that my body gets to take a break and start to repair the damage of the radiation. I feel bad for Dennis and the kids, I do my best to keep a good face but I'm tired, itchy and just down right irritable. They are sweet though and do give me some space to sleep and take care of myself.
Today was a little different. For starters I woke up at 3:30 AM, I was WIDE AWAKE! Errr, I hate not being able to sleep! Shortly after I got up, the boy awoke demanding food. He must be growing again, because he wants to eat all the time and typically when it is inconvenient for the rest of us....like 4 AM. He had a roll or two and was the happiest little man awake. He giggled and played in his high chair and just munched away. It is hard to stay mad at Tball, he's got a smile could light up the world! After he was done filling his belly and keeping me company, he was ready to sleep again. Since I couldn't sleep I blogged....because thats a good use of time between 4-6AM!
Now my plan was to spend my morning with Budgie. She's been having a rough week and I wanted to know that Mommy was here, sick but still her biggest fan. She woke up early, which didn't matter because I still couldn't sleep. We headed to her favorite spot, the Silver Diner at about 7:15 this morning. Took her to her gym class and then off to the kid's store (that's what she calls it) for Saturday crafts. I made it thru the Diner with no issues, but the other two activities I have to admit I was struggling. By the time we made it home I crashed.
Today was a little different. For starters I woke up at 3:30 AM, I was WIDE AWAKE! Errr, I hate not being able to sleep! Shortly after I got up, the boy awoke demanding food. He must be growing again, because he wants to eat all the time and typically when it is inconvenient for the rest of us....like 4 AM. He had a roll or two and was the happiest little man awake. He giggled and played in his high chair and just munched away. It is hard to stay mad at Tball, he's got a smile could light up the world! After he was done filling his belly and keeping me company, he was ready to sleep again. Since I couldn't sleep I blogged....because thats a good use of time between 4-6AM!
Now my plan was to spend my morning with Budgie. She's been having a rough week and I wanted to know that Mommy was here, sick but still her biggest fan. She woke up early, which didn't matter because I still couldn't sleep. We headed to her favorite spot, the Silver Diner at about 7:15 this morning. Took her to her gym class and then off to the kid's store (that's what she calls it) for Saturday crafts. I made it thru the Diner with no issues, but the other two activities I have to admit I was struggling. By the time we made it home I crashed.
Friday, February 10, 2012
The End of the Beginning
Today was my final day of radiation. I was ecstatic and nervous. The first trek of the long journey ahead is now over, but what next. For starters I know that I can take my dignity back at least for a little while. No more being filleted like a fish daily with my butt to the wind. No more having to drink a bunch of water and than praying later that I don't wet myself during treatment. No more trying to jump down from the table without showing my goods or totally eating it on the landing.
The effects of the radiation have left me blistered and burned. I itch terribly in places that really should not be scratched or for that matter mentioned. Sometimes bowel movements make me want to curl up in a ball and cry for my mommy (My cat, Dash, appears instead to beg for his dinner). I'm often tired, irritable and sometimes drugged up. So was it worth it? Yes! If it means I am here on this earth for even a few more moments, than Hell YES! It will take some time for the radiation effects to go away and some side effects will be life changing. The true test will come in a few weeks when they do another ultrasound; with any luck the tumor will be gone in its entirety. That won't get me out of surgery or chemo, but it would surely lessen the extent of my surgery.
After my last treatment was done, everyone who was involved in my care gathered around to congratulate me. Even got myself a nifty certificate, but I doubt I will be hanging that on my wall for display....maybe the fridge for a week or two. And than I got the bell to ring. I had imagined that the bell would be like that on the ship's bridge or maybe like the SEALS have for the guys who can't make it, but instead it was a small hand bell. Either way I could not have been happier ringing the crap out of that thing and marking the end of my beginning.
The effects of the radiation have left me blistered and burned. I itch terribly in places that really should not be scratched or for that matter mentioned. Sometimes bowel movements make me want to curl up in a ball and cry for my mommy (My cat, Dash, appears instead to beg for his dinner). I'm often tired, irritable and sometimes drugged up. So was it worth it? Yes! If it means I am here on this earth for even a few more moments, than Hell YES! It will take some time for the radiation effects to go away and some side effects will be life changing. The true test will come in a few weeks when they do another ultrasound; with any luck the tumor will be gone in its entirety. That won't get me out of surgery or chemo, but it would surely lessen the extent of my surgery.
After my last treatment was done, everyone who was involved in my care gathered around to congratulate me. Even got myself a nifty certificate, but I doubt I will be hanging that on my wall for display....maybe the fridge for a week or two. And than I got the bell to ring. I had imagined that the bell would be like that on the ship's bridge or maybe like the SEALS have for the guys who can't make it, but instead it was a small hand bell. Either way I could not have been happier ringing the crap out of that thing and marking the end of my beginning.
Saturday, February 4, 2012
Women's Issues ---It really is TMI
I am going to warn you all by saying this post may be a little too much information for most of you. Feel free to skip this post if you wish. If you do decided to continue reading, don't say I didn't warn you.
So as I go through this whole treatment process I have come up along some information that was interesting to me as a woman. Pelvic radiation has a good chance of helping get rid of my cancer, but it has some huge side effects. For starters, there is a very good chance that I will be sterile after all of this is said and done. The ovaries are very susceptible to radiation. Now after I had Tball I had my tubes tied, so to be honest that wasn't really an issue for me. The doctors didn't really go into the whole discussion of sterility because I had already had a tubal ligation. What they didn't explain (or at least I don't recall them talking about it) and I didn't think about is that this treatment has a good possibility of causing early menopause. Plus side to this, no more monthly periods. YAY! I mean what is really the point of those if you aren't having kids anymore. On the flip side, I'm not sure I'm ready for menopause and all the symptoms that go with it. Fatigue, irritability, sleep problems (probably isn't helping that it is 4 AM right now), weight gain, hot flashes, osteoporosis the list goes on.
Another issue that I have read about on my RC forums etc. is called vaginal stenosis. This is when the vagina due to scar tissue from radiation shortens or closes up! I didn't even know that was fucking possible! Ladies complain that they can't even get a tampon in there without pain. Sex usually brings tears to their eyes, and not the good tears! Really? WTF! The concern is for the doctors is that they still need to be able to do pap smears because it is possible that the cancer could spread to the vagina (but lets hope not!). It is not that pap smears aren't important for a variety of health reasons, but in this case it is not my biggest concern. Seriously, this issue has caught me completely off guard! My doctor says not to worry too much about it, they are typically more concerned with this particular side effect when treating patients with anal cancer or differing types of vaginal cancers. I hear her saying that, yet I see women all over the RC boards with rectal cancer posting about it. It is instances like this where the internet truly isn't helping.
So as I go through this whole treatment process I have come up along some information that was interesting to me as a woman. Pelvic radiation has a good chance of helping get rid of my cancer, but it has some huge side effects. For starters, there is a very good chance that I will be sterile after all of this is said and done. The ovaries are very susceptible to radiation. Now after I had Tball I had my tubes tied, so to be honest that wasn't really an issue for me. The doctors didn't really go into the whole discussion of sterility because I had already had a tubal ligation. What they didn't explain (or at least I don't recall them talking about it) and I didn't think about is that this treatment has a good possibility of causing early menopause. Plus side to this, no more monthly periods. YAY! I mean what is really the point of those if you aren't having kids anymore. On the flip side, I'm not sure I'm ready for menopause and all the symptoms that go with it. Fatigue, irritability, sleep problems (probably isn't helping that it is 4 AM right now), weight gain, hot flashes, osteoporosis the list goes on.
Another issue that I have read about on my RC forums etc. is called vaginal stenosis. This is when the vagina due to scar tissue from radiation shortens or closes up! I didn't even know that was fucking possible! Ladies complain that they can't even get a tampon in there without pain. Sex usually brings tears to their eyes, and not the good tears! Really? WTF! The concern is for the doctors is that they still need to be able to do pap smears because it is possible that the cancer could spread to the vagina (but lets hope not!). It is not that pap smears aren't important for a variety of health reasons, but in this case it is not my biggest concern. Seriously, this issue has caught me completely off guard! My doctor says not to worry too much about it, they are typically more concerned with this particular side effect when treating patients with anal cancer or differing types of vaginal cancers. I hear her saying that, yet I see women all over the RC boards with rectal cancer posting about it. It is instances like this where the internet truly isn't helping.
Burn baby burn
So at the start of my 4th week of radiation I started to feel the true affects of radiation therapy....the burn. Or as RC patients call it, the butt burn. My mom for weeks had been asking how my skin was doing. I guess I wasn't paying attention or maybe didn't truly understand what she was talking about. I have a tendency to enter into certain situations not wanting to know all the details. During my first pregnancy I was the mom that didn't go to the birthing classes....probably should have done that. Oh well, it worked out well anyways, my baby girl is going to be 4 in about a week. So anyways back to the burning question, what is the burn? Well when you go thru external radiation your healthy tissue in that area breaks down and that includes your skin. When my mom was asking about it I assumed that she meant my butt cheeks would get burned, yay, no! I'll blame my stupidity here on chemo brain. Everything from the taint back is like the worst sun burn you could imagine. I dread having a bowel movement with every fiber of my being. After talking it over with my doctor, she suggested that they tape my cheeks open during radiation, as if radiation couldn't get more embarrassing! Now instead of laying there on the cold table with my cheeks to the wind, I lay there like a filleted fish. I didn't realize until almost 2 weeks later that when they tape me "open" they actually tape me to the table. I'm literally trapped by a roll of scotch tape!
***WARNING*** It may get a little gross from here out, just saying.
I couldn't really tell you if the filleting has really helped my situation, shortly after talking to the doctor the first time my burn peaked (or at least lets hope so) and started to weep. The skin was dying and sloughing off...EW! I didn't even know what to do with that. My biggest concern is infection, it isn't exactly the cleanest part of your body. The burn is painful and itchy. I switched to boxers because they don't rub up against my skin. I've tried different creams, etc. but the only thing that helps (and only slightly) and doesn't interfere with radiation (zinc oxide will make the burn worse if not all off before treatments) is Aquaphor. That and a frozen bag of peas that are currently sitting in my fridge labeled "butt peas, do not eat." To be honest the best thing to do is let it air out like a diaper rash, but it isn't like I can just walk around with no pants on all day. At times is uncomfortable to walk, but it is unbearable to poop. Thank God for my diaper sprayer, aka bidet and baby wipes. I tried tylenol for awhile as it helps take the edge off, but only slightly. My doctor prescribed me pain medication to take about 30 minutes before a BM. She told me to take the first one in the evening to see how it affects me. They are fast acting narcotics, but the affects last but a few short hours. HOLY CRAP! I took my first dose this week after the kids were tucked in bed. Within 30 minutes the room started to spin and my pain was gone. It was like being drunk without the calories or the nasty hangover, I get why so many people become addicted to these things. In the last couple days the pain has subsided a bit, so I try to avoid taking to many pain pills. They are a double edge sword, they take the pain away for a little while, but they also make you constipated....as I already explained it hurts to poop!
Next week is my last week of radiation, I hear it is the worst. The last three days they do what my doctor calls bursting. During the 28 treatments, the first 25 treat the larger pelvic area in order to ensure positive margins, the last three treatments attacks only the tumor and lymph nodes themselves. From how my doctor described it the last 3 treatments require a higher dose of radiation. In other words the fallout from the last 3 treatments may be a bit worse for my already sore butt.
***WARNING*** It may get a little gross from here out, just saying.
I couldn't really tell you if the filleting has really helped my situation, shortly after talking to the doctor the first time my burn peaked (or at least lets hope so) and started to weep. The skin was dying and sloughing off...EW! I didn't even know what to do with that. My biggest concern is infection, it isn't exactly the cleanest part of your body. The burn is painful and itchy. I switched to boxers because they don't rub up against my skin. I've tried different creams, etc. but the only thing that helps (and only slightly) and doesn't interfere with radiation (zinc oxide will make the burn worse if not all off before treatments) is Aquaphor. That and a frozen bag of peas that are currently sitting in my fridge labeled "butt peas, do not eat." To be honest the best thing to do is let it air out like a diaper rash, but it isn't like I can just walk around with no pants on all day. At times is uncomfortable to walk, but it is unbearable to poop. Thank God for my diaper sprayer, aka bidet and baby wipes. I tried tylenol for awhile as it helps take the edge off, but only slightly. My doctor prescribed me pain medication to take about 30 minutes before a BM. She told me to take the first one in the evening to see how it affects me. They are fast acting narcotics, but the affects last but a few short hours. HOLY CRAP! I took my first dose this week after the kids were tucked in bed. Within 30 minutes the room started to spin and my pain was gone. It was like being drunk without the calories or the nasty hangover, I get why so many people become addicted to these things. In the last couple days the pain has subsided a bit, so I try to avoid taking to many pain pills. They are a double edge sword, they take the pain away for a little while, but they also make you constipated....as I already explained it hurts to poop!
Next week is my last week of radiation, I hear it is the worst. The last three days they do what my doctor calls bursting. During the 28 treatments, the first 25 treat the larger pelvic area in order to ensure positive margins, the last three treatments attacks only the tumor and lymph nodes themselves. From how my doctor described it the last 3 treatments require a higher dose of radiation. In other words the fallout from the last 3 treatments may be a bit worse for my already sore butt.
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