Ok ok, so I'm really terrible at keeping a blog....what's it been um almost a year?
Quick recap. Yes I did have my surgery and yes I did end up permanently tied to a bag, but no it has not diminished my life. I am still an active woman, a crazier than ever wife and a mom of two active rug rats. Sure there is more daily maintenance that I have to endure, but that is life. I started chemo in May and finished 9 out of 12 treatments. I had a really hard time keeping up my blood counts that the doctors felt enough was enough. I wanted to jump and kiss the doctor when she said I was done, I even considered doing a little irish jig right in her office. Ok, so I didn't get all 12 treatments in, the key is that I made it thru over 6 months of chemo! Even better, I've had my post treatment scan and I'm NED!!!!
It is now 2013 and time for me to start a new. 2012 was a down right shitty year for us and now in the new year we are back to where we are suppose to be. So what am I going to do with my new year you ask? Well I am making a resolution to continue this blog. Not as a cancer blog, but as a life blog. (Hmmm, life blog, sounds like a name for a B horror flick....Life Blog Attacks or the sequel Return of the Life Blog!!!) I'm turning it into a blog to keep people updated on our going ons, what are we up to, how are we handling what life throws us...and trust me life throws us a lot of shit. So here in the new year I am promising at least 1 blog post a week. So grab some popcorn and get yourself prepared!
Monday, December 31, 2012
Sunday, April 1, 2012
My peace
It has been awhile since my last post. I've spent the last few weeks recovering from radiation and preparing for the road ahead. It wasn't until two weeks after the end of radiation that I started to truly feel better. My energy is back, my body is healing and almost all the affects of the chemo and the radiation have worn off. I spent a few of my recovery weeks in denial. I feel to good to have cancer....maybe if I hold out I'll just wake up from this bad dream. Deep down, I know that isn't going to happen.
About a two weeks ago I started my surgery preps. I went in for what is called a sigmoid scope. They put me to sleep so as to take pictures of the tumor. My tumor has shrunk, but not as much as originally thought. The tumor is still very low and it is a high probability that some of my sphincter muscles will have to be removed. Dr. H is giving me what seems like an 80/20 chance in favor of a colostomy. On her recommendation, we went up to Bethesda to see another colorectal specialist (who will be assisting with my surgery) to get a second opinion.
I'd like to stop here and say that the trip to Bethesda was probably the most humbling experience. As I walked around the hallways at the hospital from appointment to appointment, I must have seen half a dozen young men in their 20s who were double amputees. My mind couldn't help but wonder what they must have been gone thru and what they still have to face. It made me feel as if my problems were not small, but less of a burden.
We had several appointments at Bethesda and ended up spending a good majority of our day there. We saw the radiation oncologist, the colorectal specialist (and handful of his minions (interns...as if I didn't have a large enough audience already!!)), and the ostomy nurses. All of the appointments went as expected. Dr. D, the colorectal specialist, gave us a slightly better odds on the surgery saying that it could go either way....50/50. Don't get me wrong I am excited about the possibility of being whole, with no waste collection bag attached to me, but I have a lot of concerns about the reconnection surgery. For starters, it may not work! And then I would have to have another surgery! There are a few other not so fun outcomes as well....but I digress.
We left Bethesda completely spent and with two pieces of information. First, my surgery will be on the 9th of April. Secondly, how that surgery will turn out is anyone's guess.
About a two weeks ago I started my surgery preps. I went in for what is called a sigmoid scope. They put me to sleep so as to take pictures of the tumor. My tumor has shrunk, but not as much as originally thought. The tumor is still very low and it is a high probability that some of my sphincter muscles will have to be removed. Dr. H is giving me what seems like an 80/20 chance in favor of a colostomy. On her recommendation, we went up to Bethesda to see another colorectal specialist (who will be assisting with my surgery) to get a second opinion.
I'd like to stop here and say that the trip to Bethesda was probably the most humbling experience. As I walked around the hallways at the hospital from appointment to appointment, I must have seen half a dozen young men in their 20s who were double amputees. My mind couldn't help but wonder what they must have been gone thru and what they still have to face. It made me feel as if my problems were not small, but less of a burden.
We had several appointments at Bethesda and ended up spending a good majority of our day there. We saw the radiation oncologist, the colorectal specialist (and handful of his minions (interns...as if I didn't have a large enough audience already!!)), and the ostomy nurses. All of the appointments went as expected. Dr. D, the colorectal specialist, gave us a slightly better odds on the surgery saying that it could go either way....50/50. Don't get me wrong I am excited about the possibility of being whole, with no waste collection bag attached to me, but I have a lot of concerns about the reconnection surgery. For starters, it may not work! And then I would have to have another surgery! There are a few other not so fun outcomes as well....but I digress.
We left Bethesda completely spent and with two pieces of information. First, my surgery will be on the 9th of April. Secondly, how that surgery will turn out is anyone's guess.
Friday, February 17, 2012
Losing Sleep
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.
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.
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.
Sunday, January 22, 2012
Well at least its not....
My third week of radiation has come to a close and thankfully the last couple days have treated me well. No repeats of Tuesday morning...YAY!
Sometimes I find it hard to tell some people I have rectal cancer. Just seems dirty in away, almost shameful, but I don't know why. I think it is a stigma we put towards are bowel movements. It's like when you have gas and you are mortified that someone might hear you or worse smell it, but why everyone has gas sometimes. Shit happens! The other part of me wants to share my story, colorectal cancer is not just an old person's disease. It is the 3rd most commonly diagnosed cancer for both men and woman worldwide. So why do we never hear about it, especially in young people? Probably because 9 out of 10 of these people who are diagnosed are over the age of 50. I just can't figure out why I got this. I'm not over weight, I eat right, I don't smoke nor do I drink excessively, I don't have any type of family history with cancer (not just colorectal cancers but no cancers!), I probably could use to exercise more but I'm not that out of shape. So what caused this? Is the devil just f-ing with me? I'm still waiting for Demi Moore's boy toy to jump out and tell me I've been Punked!
As you can imagine, I am at the hospital fairly often, sometimes it feels like I am there all day and that's because sometimes I am there all day. Daily radiation followed by lab work and other appointments and sometimes even appointments for my kids (obviously not related to my cancer treatment). As most people do when they are waiting for what seems like forever in the waiting room you make small talk. So Tuesday afternoon I was in the waiting area with Tommy. An elderly couple started talking to me (I get in more conversations with elderly couples when the kids are with me, I don't know maybe it reminds them of their own family when they were younger) and somehow along the way it was mentioned that I had cancer. The lady asked if it was breast cancer and I said no it's rectal cancer. Her response was "Well at least its not breast cancer." Please don't misunderstand me when I say that I was a tad irritated by her comment. I understand the seriousness that breast cancer can impose, that all cancer can impose. My issue is that her response seemed to imply that my cancer was less concerning than others. I have stage III rectal cancer, I certainly think that deserves a little bit of concern! I still have almost a year of treatment left, not to mention that after April I may be pooping into a bag of the rest of my life! Ok I get it, she probably was trying in some way to make me feel better, but all it did was irk me. Talking with Dennis, he said he would get the same thing when he would tell people he had melanoma, people would be like "oh they just burn that off, right?" No, no they don't!
I guess what you should take from that story is that if someone tells you that they have cancer don't give them the "it could be worse scenario" or trivialize it. Cancer is serious, regardless of stage. Every cancer patient and immediate family member knows the worry and the dread of every scan. Sure your test results come back and tell you that you are NED (have No Evidence of Disease) and you breath a huge sigh of relief, but that feeling that it could come back is real. That doesn't mean we live our lives in fear, it is just that we respect the reality of life. My husband has been NED for just over two years, we do our best to live our lives to the fullest, even had a second child. However, I do still stop to say a prayer when he goes in every 3 months for his checkups.
Sometimes I find it hard to tell some people I have rectal cancer. Just seems dirty in away, almost shameful, but I don't know why. I think it is a stigma we put towards are bowel movements. It's like when you have gas and you are mortified that someone might hear you or worse smell it, but why everyone has gas sometimes. Shit happens! The other part of me wants to share my story, colorectal cancer is not just an old person's disease. It is the 3rd most commonly diagnosed cancer for both men and woman worldwide. So why do we never hear about it, especially in young people? Probably because 9 out of 10 of these people who are diagnosed are over the age of 50. I just can't figure out why I got this. I'm not over weight, I eat right, I don't smoke nor do I drink excessively, I don't have any type of family history with cancer (not just colorectal cancers but no cancers!), I probably could use to exercise more but I'm not that out of shape. So what caused this? Is the devil just f-ing with me? I'm still waiting for Demi Moore's boy toy to jump out and tell me I've been Punked!
As you can imagine, I am at the hospital fairly often, sometimes it feels like I am there all day and that's because sometimes I am there all day. Daily radiation followed by lab work and other appointments and sometimes even appointments for my kids (obviously not related to my cancer treatment). As most people do when they are waiting for what seems like forever in the waiting room you make small talk. So Tuesday afternoon I was in the waiting area with Tommy. An elderly couple started talking to me (I get in more conversations with elderly couples when the kids are with me, I don't know maybe it reminds them of their own family when they were younger) and somehow along the way it was mentioned that I had cancer. The lady asked if it was breast cancer and I said no it's rectal cancer. Her response was "Well at least its not breast cancer." Please don't misunderstand me when I say that I was a tad irritated by her comment. I understand the seriousness that breast cancer can impose, that all cancer can impose. My issue is that her response seemed to imply that my cancer was less concerning than others. I have stage III rectal cancer, I certainly think that deserves a little bit of concern! I still have almost a year of treatment left, not to mention that after April I may be pooping into a bag of the rest of my life! Ok I get it, she probably was trying in some way to make me feel better, but all it did was irk me. Talking with Dennis, he said he would get the same thing when he would tell people he had melanoma, people would be like "oh they just burn that off, right?" No, no they don't!
I guess what you should take from that story is that if someone tells you that they have cancer don't give them the "it could be worse scenario" or trivialize it. Cancer is serious, regardless of stage. Every cancer patient and immediate family member knows the worry and the dread of every scan. Sure your test results come back and tell you that you are NED (have No Evidence of Disease) and you breath a huge sigh of relief, but that feeling that it could come back is real. That doesn't mean we live our lives in fear, it is just that we respect the reality of life. My husband has been NED for just over two years, we do our best to live our lives to the fullest, even had a second child. However, I do still stop to say a prayer when he goes in every 3 months for his checkups.
Tuesday, January 17, 2012
My 3 day-er
MLK day weekend for me meant I got 3 days off of radiation and chemo. I have to say the weekend didn't turn out quite to my expectations. For starters, Tommy came down with a cold, runny nose and low fever, on Saturday morning. You could tell he just felt like poop. I'm not sure why, but my kids always get sick on a Friday so I either have to take them to the ER or wait out the weekend with them. We waited it out, ear infection, second time in a month!
Dennis and I traded off kids from time to time so we could get Maddie out of the house for a bit. It was freezing here in DC, so not a whole lot of options. Yes DC has a lot of museums, but they aren't the kind that a 4 yr old is going to love. Dennis took her out to the "crazy pool" at Cub Run community center on Sunday evening. I guess I should clarify, we call it the crazy pool, but really it is an indoor pool with some slides and a water park for tots. I would have loved to go myself, but the Tron lines still on my backside, courtesy of the radiation techs, fatigue and Tommy's cold kept me here at the house.
Monday was also a slow day. Stayed in and my friend Maggie headed out here to the burbs to visit me and bring us some awesome food. Monday night I went back on the chemo. I guess my body was enjoying chemical hiatus because it was pissed when I started up my pills again. I took my pills a bit late and headed to bed around 11. I had a hard time sleeping and from 12 to 1 AM I felt nauseous, but not enough to pray to the porcelain god. I finally fell asleep and woke up abruptly with sharp pains in my abdomen. The pains came in waves, like contractions during labor. I alternated between lying in the fetal position in my bed and crapping my brains out on the toilet. This went on for at least an hour before the pain subsided and I could finally get back to sleep. My oncologist had stocked me with meds so I at least had something to combat the diarrhea. Today I woke up exhausted but the pain seemed to be gone. I was told that the radiation may cause inflammation and the pains I was having may be associated with that. I see my radiation oncologist tomorrow and hopefully find out more about the cause and what I can do to combat the issue should it happen again.
Dennis and I traded off kids from time to time so we could get Maddie out of the house for a bit. It was freezing here in DC, so not a whole lot of options. Yes DC has a lot of museums, but they aren't the kind that a 4 yr old is going to love. Dennis took her out to the "crazy pool" at Cub Run community center on Sunday evening. I guess I should clarify, we call it the crazy pool, but really it is an indoor pool with some slides and a water park for tots. I would have loved to go myself, but the Tron lines still on my backside, courtesy of the radiation techs, fatigue and Tommy's cold kept me here at the house.
Monday was also a slow day. Stayed in and my friend Maggie headed out here to the burbs to visit me and bring us some awesome food. Monday night I went back on the chemo. I guess my body was enjoying chemical hiatus because it was pissed when I started up my pills again. I took my pills a bit late and headed to bed around 11. I had a hard time sleeping and from 12 to 1 AM I felt nauseous, but not enough to pray to the porcelain god. I finally fell asleep and woke up abruptly with sharp pains in my abdomen. The pains came in waves, like contractions during labor. I alternated between lying in the fetal position in my bed and crapping my brains out on the toilet. This went on for at least an hour before the pain subsided and I could finally get back to sleep. My oncologist had stocked me with meds so I at least had something to combat the diarrhea. Today I woke up exhausted but the pain seemed to be gone. I was told that the radiation may cause inflammation and the pains I was having may be associated with that. I see my radiation oncologist tomorrow and hopefully find out more about the cause and what I can do to combat the issue should it happen again.
Moving pieces
Second week of radiation is done! My mother-in-law, Chris, came down from Pennsylvania to give us a hand for the week. It was Maddie's last week at her half day preschool, Tommy's first week at day care and my second week of radiation. Lots of moving pieces to say the least.
Let's start with....Radiation! Always exciting. For starters they changed up how they do my daily radiation. It use to be a 10 minute deal, but they decided that each day I will get what they call a "baby" CT scan. Basically the crazy star trek like machine (I wish I had a picture to attach to show you all what it looks like) takes a scan of my backside and from there they determine how to target the radiation so we get the biggest bang for the buck. The thought process is that they can do a better job of target the tumor alone and do less damage to the surrounding tissue/organs. Time wise it means I am now laying on the table (cheeks to the wind so to speak) for an extra 15 to 20 minutes. Although I am excited about the more targeted treatment, not so stoked about laying on that table for 30 minutes. I don't know who designed that thing, but I swear it could be used as a torture device.
I also saw all three of my doctors last week. Met with my surgeon again and was told that April will most likely be when I will be having surgery, but as to what type of surgery it is will have to be determined after radiation treatment is complete. I also had some blood work and thankfully my blood count is good. As of last week my side effects were moderate. Wednesday was the worst day for me, a bout of bowel issues, but thankfully it passed fairly easily and thankfully I made it to the pot on time....that's always a plus. Chris was here so I was able to lay down and rest regularly, which was a big help.
Let's start with....Radiation! Always exciting. For starters they changed up how they do my daily radiation. It use to be a 10 minute deal, but they decided that each day I will get what they call a "baby" CT scan. Basically the crazy star trek like machine (I wish I had a picture to attach to show you all what it looks like) takes a scan of my backside and from there they determine how to target the radiation so we get the biggest bang for the buck. The thought process is that they can do a better job of target the tumor alone and do less damage to the surrounding tissue/organs. Time wise it means I am now laying on the table (cheeks to the wind so to speak) for an extra 15 to 20 minutes. Although I am excited about the more targeted treatment, not so stoked about laying on that table for 30 minutes. I don't know who designed that thing, but I swear it could be used as a torture device.
I also saw all three of my doctors last week. Met with my surgeon again and was told that April will most likely be when I will be having surgery, but as to what type of surgery it is will have to be determined after radiation treatment is complete. I also had some blood work and thankfully my blood count is good. As of last week my side effects were moderate. Wednesday was the worst day for me, a bout of bowel issues, but thankfully it passed fairly easily and thankfully I made it to the pot on time....that's always a plus. Chris was here so I was able to lay down and rest regularly, which was a big help.
In other news, Tommy had his first day at day care on Monday and surprisingly enough he really likes it. Don't get me wrong he cried when I left, but when I picked him up he was as happy as could be and looked as he really enjoyed his day. He napped there, he ate like a champ and he loves Roni, his day care provider. His day care was really weighing heavily on me, but Roni is the sweetest ladies and she works with Tommy on his PT and just dotes over him and the other kids there. She has 5 kids over her own who are sweet as can be, so you know you are leaving your child in good hands. What a relief!
Maddie finished up at her local preschool this week. Chris was a huge help, getting Maddie to ballet, school, gym etc. It was awesome to see the two of them playing together and crafting together. They made valentines day cards for everyone, too cute! Maddie got to see her new school on Wednesday and instantly loved it. She talked about going to her new school for the rest of the week. Dennis woke up for work on Friday, around 5:30 or 6:00 and found Maddie lying on the floor in the main room waiting to go to her "new" school. Dennis had to tell her, sorry but thats next week. We did our best to reel the girl in, I didn't want to have her hurting anyone's feeling at her old school.
Just a side note on her old school, they are awesome. Her teachers decided to get together and organize dinners for us for the next month! One of the mom's brought over a bacon pasta dish tonight that was FABULOUS! It was the first time that Tommy actually ate pasta and Maddie ate everything on her plate, so thats something...but of course everything tastes better with bacon! Other parents from the school and Maddie's ballet have offered to watch the kids, get us groceries. The outpour of help has been almost overwhelming, but also awe inspiring.
Wednesday, January 11, 2012
The End of My First Week
I'm a little behind on post sorry but I tire easily these days. Last Friday was the last day of my first week. So how did my first week of radiation-chemo go you wonder? It went pretty well. I am tired and I am achey, but thankfully very few other side effects have yet to crop up. Friday's radiation had a bit of a new spin to it. For starters somehow I didn't quite get the latch to click on the changing room door and got walk in on while I stood there in my t-shirt and nothing else. Thankfully it was one of my doctors and another female patient. Now, I normally would be embarrassed by such an incident but after two pregnancies and now rectal cancer....well I just don't have that much modesty or dignity left. Dr. K felt pretty bad, but I told her not to fret, it was bound to happen sooner or later. After that lovely incident I laid down for my scan. Techs told me that they would have to draw on my butt. I am an extremely ticklish person and it took quite a lot of self control not to laugh out load when they started to draw. What I didn't know until after my treatment was done that day, was their drawings were done in permanent marker. Fabulous! It isn't pretty drawings, sorry no butterflies. They just drew lines (they told me the reason, but I wasn't really listening as I was concentrating on not laughing), I look like some character out of TRON. Maddie saw them and asked why I had blue lines all over my behind. I scrambled to come up with an answer for her.
After radiation was done I saw my medical oncologist, she wanted to check in with me and see how I was doing. She had a theory about how certain woman handle therapy. She noticed that women who had really rough pregnancies, morning sickness and the like, tend to do terrible with chemotherapy. Luckily for me I never had morning sickness, at least never threw up! Now that doesn't me that towards the end I won't have more nausea, it just means that I would be less likely to be so nauseous that I would have to be admitted to the hospital. She told me that she has one patient that she has to alter her medication so much because otherwise it puts her over the top and she ends up in the ER and has to be admitted! Yikes! This patient was quite sick during her pregnancies.....interesting.
Friday night, despite my exhaustion I decided to forget about the cancer and go out with some girl friends. Maggie was performing with her improv group downtown and I have never seen an improv show. So I hoped on the train and headed into the city. I should mention that I had to do a pit stop at one of the station because, due to the radiation, I have to go pee way more frequently. I feel like an old lady! Met up with some other friends and headed into the show. It was pretty funny and it allowed me to forget, at least momentarily, all of my troubles. Thank you ladies for the fun evening!
After radiation was done I saw my medical oncologist, she wanted to check in with me and see how I was doing. She had a theory about how certain woman handle therapy. She noticed that women who had really rough pregnancies, morning sickness and the like, tend to do terrible with chemotherapy. Luckily for me I never had morning sickness, at least never threw up! Now that doesn't me that towards the end I won't have more nausea, it just means that I would be less likely to be so nauseous that I would have to be admitted to the hospital. She told me that she has one patient that she has to alter her medication so much because otherwise it puts her over the top and she ends up in the ER and has to be admitted! Yikes! This patient was quite sick during her pregnancies.....interesting.
Friday night, despite my exhaustion I decided to forget about the cancer and go out with some girl friends. Maggie was performing with her improv group downtown and I have never seen an improv show. So I hoped on the train and headed into the city. I should mention that I had to do a pit stop at one of the station because, due to the radiation, I have to go pee way more frequently. I feel like an old lady! Met up with some other friends and headed into the show. It was pretty funny and it allowed me to forget, at least momentarily, all of my troubles. Thank you ladies for the fun evening!
Wednesday, January 4, 2012
The Beginning
The day to begin my treatment finally came, yesterday. The visits aren't very long, but I found the first one to be nerve racking. I checked in and got changed into hospital attire and was asked to wait for the technician to call me back. I waited a bit longer than I expected, something to do with the software update on the machine. I was finally called back and was positioned on the table. They use the tattoos that I was given previously to ensure I am in exactly the right spot. Once everything is set correctly we begin. The first day (and once a week I am told) they do films, which takes an extra couple of minutes. The machine makes a lot of noise and even though I'm facing down and can't see all that much I can tell that there is a lot of movement. It reminds me of scenes from a sci-fi movie were the machines are working on patients, like when Luke gets his new hand in Star Wars. Probably didn't help that Dennis was watching the Trilogy (sorry I don't believe the prequels exist so it will always be a trilogy to me) this past weekend. Probably the worst thing that happened during my first visit, I was told to drink water so that I could have a full bladder. I couldn't move but I had to go so bad. Last thing I need to be doing is the pee pee dance while I'm getting radiated. I was seriously on the verge of peeing my pants...well if I was wearing pants. Thankfully today's treatment was quite a bit shorter and went a lot smoother.
I've gone thru only two treatments and the side effects have started to kick in. Nothing major, but I am beat. It feels like I have the flu, achey, tired and kind of spaced out. I get to about 3 PM and I hit the wall. At about 4 today, I checked out and took a 2-3 hr nap. I haven't done that in quite some time. When I was a kid, my best friend's mom was going thru chemo and I remember her always being tired. I have a new appreciation for what she was going thru. They tell me the side effects will get worse as I continue treatment, but I'm still have hope that this is a fluke and I will be unaffected as time goes on.
I've gone thru only two treatments and the side effects have started to kick in. Nothing major, but I am beat. It feels like I have the flu, achey, tired and kind of spaced out. I get to about 3 PM and I hit the wall. At about 4 today, I checked out and took a 2-3 hr nap. I haven't done that in quite some time. When I was a kid, my best friend's mom was going thru chemo and I remember her always being tired. I have a new appreciation for what she was going thru. They tell me the side effects will get worse as I continue treatment, but I'm still have hope that this is a fluke and I will be unaffected as time goes on.
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