Tuesday, May 24, 2011
Tuesday, May 17, 2011
Sisters, it has been one year
It has been one year since that shocking day of getting dx. On that day it wasn't even a thought that crossed my mind that I could have cancer.
So this is how I have decided to mark the day I got dx with cancer:
Ok, this is the official written notice to my 5 sisters that they need to get a colonoscopy. My hope is to scare you and make you think AND make you ACT. This tactic is used all the time by the medical profession to get people to DO something about their health and I feel this may be the only way to get you to ACT. This is only done out of love and care and me wanting you all to avoid what I am going through. Just so you know I am not just picking on you, there will be a letter for my kids since they are now also high risk and will need to get checked at around age 26 yrs too and I will have an equally strong letter for them since the reality is I have a high chance of not being here when they are that age so I won't be able to drag them to the dr and will have to rely on a letter I write and my husband AND hopefully you all to tell them to get it done and you can tell them you had it done and you can be there for them.
First, I am thinking about how I would respond to the news if this whole situation would have been reversed and it had been one of you all and you said to me that your cancer doctor said to tell your sisters who are within 10-15 yrs of your age to get a colonoscopy. My first thought is no, nope, yuck, no way, why me, I don't need that, it wouldn't happen to me, I hate doctors, etc etc etc I know I could come up with a whole bunch more reasons not to get one, but you get the point. So I understand you too saying no. So go ahead and say "no" right now and then take a break and then *really* think about it. I know I would have had to have time to come to the conclusion to get one. And heck I was having symptoms and even then had to push myself to get one so I know how much easier it is to say no right now when things are fine.
So, now, step two, go and read my whole blog despite the warning at the top of my page that clearly warns people not to read it since it is so horrible horror reading. So I know maybe as you read it you will say "I would handle the cancer dx so much better than Kim." And I hope you would, but the point is that even if you would handle getting cancer so much better than me the point is that it STILL SUCKS and no one should have to go through it even if they "handle" it well. Also, as you are reading know that I have left out SO MUCH icky yucky stuff that goes along with a colorectal cancer dx and the treatment they give you for it. Just use your imagination or go read colonclub.com and pick any thread dealing with bathroom and pain and sickness to get the full story or you can call me if you want and I can give you the gory details.
Now to give you some facts: It is recommended for ALL my sisters, even you Sheri who is the youngest, to get a scope. I started having symptoms at age 36 and they say this cancer was probably there as early as 26-28 yrs old! So imagine if I had gotten a scope at 28 yrs old they found something so very small and not even cancer yet, but what they call precancer and take it out and it doesn't even hurt you to do it and then you are fine! Well since I had no warning and NO SYMPTOMS at age 28 and the symptoms didn't start till age 36 it gave the precancer lots of time to grow to big cancer that is stage 3 (hey there are only 4 stages in cancer and stage 4 being the worst) and my odds stink now compared to someone finding a precancer or even a stage 0 or stage 1. So here I am ringing loudly the warning bell for you my sisters so you can get checked *before* stage 3. There was no one to ring the bell for me, lucky for you, you have me. And I would hope if the situation was reversed you would badger me into getting checked because you cared and didn't want me to suffer. I don't want anything bad to happen to you all. I look at all your pictures and posts on facebook and see the happiness and normalness and pray it never ends for you. I wish I had been able to catch this at age 28 before it turned into cancer. Reasons you may say you don't need one---you don't have symptoms--this type of cancer doesn't always have symptoms and sometimes not tell it is later stages. Symptoms that could be associated with this--bleeding, stomach aches, stomach bloating, constipation, diarrhea, anemia. Risks that make you higher risk--smoking, overweight, having a relative who was dx before age 50 yrs. For me I didn't have any symptoms until it was already stage 3 and I didn't have the risk factors at all and look what happened to me.
I know the ick factor of it is probably THE reason you don't want to get one and like I said before I can totally understand that. But here is some info to help you understand it better and I know right now you will not believe me because I know I would not have believed it either but I am telling the truth. Mostly, what is the bad about having a scope is the *idea* of it and what is actually means but the *actual* process is easy and nothing horrible. So just remember it is just the thought of the scope but not what actually happens that is bad. The good is you will loose weight! Take my advice and it will be even easier to have one. For example, if you are having your scope on a Wednesday then on Sunday eat very lightly, Monday stick to even lighter just little snacks, then Tuesday is your "prep" day where you will flush every thing out and you are not supposed to eat anything. This is the day you will thank me and be so glad you didn't eat full regular meals on Sunday and Monday. Just imagine how much more would come out if you had. Then on Wednesday you can eat after the scope. I easily loose 5lbs, The drs of course say you can eat normally all the way up to Tuesday "prep day" and you can, but you will have more time in the bathroom and you won't loose as much weight which I like to loose weight since I have to do this. Also, most prep days say to start late afternoon, but I think it is better to start early so you know you will be done by bed time and you are not waking in the middle of the night having to go to the bathroom. Also, most people will say the drink they give you is horrible tasting so do not drink the prep mix most drs give you! There is an easier tasteless way to do it. You know I hate to drink anything tasting horrible, just ask Dee. So my dr gave me the tasteless mix and little pills smaller than a tick tact (since you also know I have a hard time swallowing pills). Both are over the counter so no Rx needed, just go to Walmart/Target/Walgreens buy Miralax (also comes generic) and Duculax Laxative (not stool softener and also comes generic). Basically you will mix the whole bottle of Miralax which is tasteless in water or a non red juice and drink it all day and you will take several pills with it. I can forward to you the copy that my dr gave me so you can use and/or show your dr in case they say you have to do the yucky tasting stuff. Don't skip doing the scope because some stupid dr says you have to do the yucky stuff, just say ok and then do this prep I told you about. Of course if you really want to you can drink the yucky stuff, probably what will happen is you will go and get the yucky stuff the dr says and then you will taste it and then run out and buy what I told you to. Believe it or not this is the worst part---having to stay home all day and go to the bathroom lots, just keep thinking about the weight you are loosing! So you are probably not freaking out about this part of the scope and it is the actual scope that you are freaking about. I know I was. But you do not even know anything happened to you, you are completely asleep and do not remember anything at all. No pain, no memory. If you have had surgery, do you remember your surgery and being operated on? Nope, this is just like it. They give you great drugs and make sure you say you want to be put out for it, because some people (crazy) want to be awake for it, but not me and probably not you either. I can tell you later what drugs to specifically ask for. During the procedure they will see if there is any precancer tumors and they can take it out right then if they see anything. Again, you would not feel anything during it or afterwards. That's it! If this scope is "clean" and they didn't find anything you can wait about 3yrs till another one. And you should have another even if this one is clean because one clean scope doesn't mean you are fine for the rest of your life. Just like why you have a pap smear every so often you need this done too especially since you have a very high family risk now.
Another question---if I had breast cancer the same recommendation is for my sisters to have a mammogram at age 26 yrs old, would you have a mammogram? Tamela said yes she would get a mammogram yet she said no to the scope. So sorry I didn't have breast cancer (I have a whole blog post on how I wish I had breast cancer vs this cancer) so I have this stupid stigma cancer and the only way to detect it is a scope. But just remember this scope is NOTHING compared to all the horrible stuff I have been through dealing with this cancer and the fact that I will die sooner (and in horrible pain, the drs like to always point out to me) so just remember that and be brave and suck it up and get it done. I wish I was in your place, I wish I could have had a warning bell. You do so take advantage of it, don't make my suffering in vain and that I went through all of this and it saved no one.
Look at your children and look at your husband and imagine saying "I know I could help protect myself from becoming like my sister Kim who has had to put herself, and her family and children through horrible stuff and she will most likely not live as long as she thought she would but I am just not going to go and get a scope done."
Please respond, I would love to know what your thoughts are even if it is to tell me you are not going to get a scope. I will answer any questions especially since your local family ob/gyn dr may not know much about my cancer and screening recommendations and may give you wrong info since you are "so young" since most people think of this as a old person cancer. You really need to see a GI dr also known as gastroenterologist who this is what they do and tell them your sister got this at 36 yrs old and was already stage 3.
Link to a female GI dr in Pensacola, of course there is other male drs who are GI drs but thought you would want a female one.
http://westfloridahospital.com/physicians/profile/Dr-Lakshmi-Gopal-MD
OK so now there is no excuses. I have done what I needed to do and it is now your fully informed decision as to what you will do. I wish I had been given a chance. Remember, this post is done in love.
So this is how I have decided to mark the day I got dx with cancer:
Ok, this is the official written notice to my 5 sisters that they need to get a colonoscopy. My hope is to scare you and make you think AND make you ACT. This tactic is used all the time by the medical profession to get people to DO something about their health and I feel this may be the only way to get you to ACT. This is only done out of love and care and me wanting you all to avoid what I am going through. Just so you know I am not just picking on you, there will be a letter for my kids since they are now also high risk and will need to get checked at around age 26 yrs too and I will have an equally strong letter for them since the reality is I have a high chance of not being here when they are that age so I won't be able to drag them to the dr and will have to rely on a letter I write and my husband AND hopefully you all to tell them to get it done and you can tell them you had it done and you can be there for them.
First, I am thinking about how I would respond to the news if this whole situation would have been reversed and it had been one of you all and you said to me that your cancer doctor said to tell your sisters who are within 10-15 yrs of your age to get a colonoscopy. My first thought is no, nope, yuck, no way, why me, I don't need that, it wouldn't happen to me, I hate doctors, etc etc etc I know I could come up with a whole bunch more reasons not to get one, but you get the point. So I understand you too saying no. So go ahead and say "no" right now and then take a break and then *really* think about it. I know I would have had to have time to come to the conclusion to get one. And heck I was having symptoms and even then had to push myself to get one so I know how much easier it is to say no right now when things are fine.
So, now, step two, go and read my whole blog despite the warning at the top of my page that clearly warns people not to read it since it is so horrible horror reading. So I know maybe as you read it you will say "I would handle the cancer dx so much better than Kim." And I hope you would, but the point is that even if you would handle getting cancer so much better than me the point is that it STILL SUCKS and no one should have to go through it even if they "handle" it well. Also, as you are reading know that I have left out SO MUCH icky yucky stuff that goes along with a colorectal cancer dx and the treatment they give you for it. Just use your imagination or go read colonclub.com and pick any thread dealing with bathroom and pain and sickness to get the full story or you can call me if you want and I can give you the gory details.
Now to give you some facts: It is recommended for ALL my sisters, even you Sheri who is the youngest, to get a scope. I started having symptoms at age 36 and they say this cancer was probably there as early as 26-28 yrs old! So imagine if I had gotten a scope at 28 yrs old they found something so very small and not even cancer yet, but what they call precancer and take it out and it doesn't even hurt you to do it and then you are fine! Well since I had no warning and NO SYMPTOMS at age 28 and the symptoms didn't start till age 36 it gave the precancer lots of time to grow to big cancer that is stage 3 (hey there are only 4 stages in cancer and stage 4 being the worst) and my odds stink now compared to someone finding a precancer or even a stage 0 or stage 1. So here I am ringing loudly the warning bell for you my sisters so you can get checked *before* stage 3. There was no one to ring the bell for me, lucky for you, you have me. And I would hope if the situation was reversed you would badger me into getting checked because you cared and didn't want me to suffer. I don't want anything bad to happen to you all. I look at all your pictures and posts on facebook and see the happiness and normalness and pray it never ends for you. I wish I had been able to catch this at age 28 before it turned into cancer. Reasons you may say you don't need one---you don't have symptoms--this type of cancer doesn't always have symptoms and sometimes not tell it is later stages. Symptoms that could be associated with this--bleeding, stomach aches, stomach bloating, constipation, diarrhea, anemia. Risks that make you higher risk--smoking, overweight, having a relative who was dx before age 50 yrs. For me I didn't have any symptoms until it was already stage 3 and I didn't have the risk factors at all and look what happened to me.
I know the ick factor of it is probably THE reason you don't want to get one and like I said before I can totally understand that. But here is some info to help you understand it better and I know right now you will not believe me because I know I would not have believed it either but I am telling the truth. Mostly, what is the bad about having a scope is the *idea* of it and what is actually means but the *actual* process is easy and nothing horrible. So just remember it is just the thought of the scope but not what actually happens that is bad. The good is you will loose weight! Take my advice and it will be even easier to have one. For example, if you are having your scope on a Wednesday then on Sunday eat very lightly, Monday stick to even lighter just little snacks, then Tuesday is your "prep" day where you will flush every thing out and you are not supposed to eat anything. This is the day you will thank me and be so glad you didn't eat full regular meals on Sunday and Monday. Just imagine how much more would come out if you had. Then on Wednesday you can eat after the scope. I easily loose 5lbs, The drs of course say you can eat normally all the way up to Tuesday "prep day" and you can, but you will have more time in the bathroom and you won't loose as much weight which I like to loose weight since I have to do this. Also, most prep days say to start late afternoon, but I think it is better to start early so you know you will be done by bed time and you are not waking in the middle of the night having to go to the bathroom. Also, most people will say the drink they give you is horrible tasting so do not drink the prep mix most drs give you! There is an easier tasteless way to do it. You know I hate to drink anything tasting horrible, just ask Dee. So my dr gave me the tasteless mix and little pills smaller than a tick tact (since you also know I have a hard time swallowing pills). Both are over the counter so no Rx needed, just go to Walmart/Target/Walgreens buy Miralax (also comes generic) and Duculax Laxative (not stool softener and also comes generic). Basically you will mix the whole bottle of Miralax which is tasteless in water or a non red juice and drink it all day and you will take several pills with it. I can forward to you the copy that my dr gave me so you can use and/or show your dr in case they say you have to do the yucky tasting stuff. Don't skip doing the scope because some stupid dr says you have to do the yucky stuff, just say ok and then do this prep I told you about. Of course if you really want to you can drink the yucky stuff, probably what will happen is you will go and get the yucky stuff the dr says and then you will taste it and then run out and buy what I told you to. Believe it or not this is the worst part---having to stay home all day and go to the bathroom lots, just keep thinking about the weight you are loosing! So you are probably not freaking out about this part of the scope and it is the actual scope that you are freaking about. I know I was. But you do not even know anything happened to you, you are completely asleep and do not remember anything at all. No pain, no memory. If you have had surgery, do you remember your surgery and being operated on? Nope, this is just like it. They give you great drugs and make sure you say you want to be put out for it, because some people (crazy) want to be awake for it, but not me and probably not you either. I can tell you later what drugs to specifically ask for. During the procedure they will see if there is any precancer tumors and they can take it out right then if they see anything. Again, you would not feel anything during it or afterwards. That's it! If this scope is "clean" and they didn't find anything you can wait about 3yrs till another one. And you should have another even if this one is clean because one clean scope doesn't mean you are fine for the rest of your life. Just like why you have a pap smear every so often you need this done too especially since you have a very high family risk now.
Another question---if I had breast cancer the same recommendation is for my sisters to have a mammogram at age 26 yrs old, would you have a mammogram? Tamela said yes she would get a mammogram yet she said no to the scope. So sorry I didn't have breast cancer (I have a whole blog post on how I wish I had breast cancer vs this cancer) so I have this stupid stigma cancer and the only way to detect it is a scope. But just remember this scope is NOTHING compared to all the horrible stuff I have been through dealing with this cancer and the fact that I will die sooner (and in horrible pain, the drs like to always point out to me) so just remember that and be brave and suck it up and get it done. I wish I was in your place, I wish I could have had a warning bell. You do so take advantage of it, don't make my suffering in vain and that I went through all of this and it saved no one.
Look at your children and look at your husband and imagine saying "I know I could help protect myself from becoming like my sister Kim who has had to put herself, and her family and children through horrible stuff and she will most likely not live as long as she thought she would but I am just not going to go and get a scope done."
Please respond, I would love to know what your thoughts are even if it is to tell me you are not going to get a scope. I will answer any questions especially since your local family ob/gyn dr may not know much about my cancer and screening recommendations and may give you wrong info since you are "so young" since most people think of this as a old person cancer. You really need to see a GI dr also known as gastroenterologist who this is what they do and tell them your sister got this at 36 yrs old and was already stage 3.
Link to a female GI dr in Pensacola, of course there is other male drs who are GI drs but thought you would want a female one.
http://westfloridahospital.com/physicians/profile/Dr-Lakshmi-Gopal-MD
OK so now there is no excuses. I have done what I needed to do and it is now your fully informed decision as to what you will do. I wish I had been given a chance. Remember, this post is done in love.
Saturday, April 30, 2011
It's been a couple of weeks
since I posted here. I did post on facebook how my last cancer blood test and ct scan was good. I was a horrible bad mood right before the ct scan. They call it scanxiety. The thought and knowing I have to drink this horrible crap that makes me throw up and feel sick for 2days makes me like that. And then the waiting for the results wanting to know but not wanting to know.
The dr asks me how I am doing. I say, "I guess that will depend on what you say about the test results." he says, "They are fine except white blood cell and iron down but normal after having chemo." and then so quickly only enough time given to me to let out a sigh of relief that he turns the talk to surgery. Have I thought about doing it anymore? I say, "Of course, EVERY SINGLE DAY I think about surgery and how I would not have been able to do it. EVERY DAY something happens that shows me that." I am so trying to be happy and I am about the good test results but it is so hard when the drs are not so happy about it, like it doesn't matter that they came back good. They can't even relish in the fact that the tests come back good.
I hate that I can hardly remember the "before" anymore. It is hard to glimpse for even a moment the "before". What I hate even more is how I feel emotionally worse now the longer I am into this. I thought it would be the opposite. The bad sadness I felt in the beginning would get less but it hasn't. I think what has happened is in the beginning I was running on adrenaline and chemo and now I have crashed. The chemo has left my mind to think since I am not always so sick as a dog and the adrenaline has been used up since isn't the worst supposed to be over since I am not doing chemo and radiation now? Now I can think and farther away from treatment I get I feel like the closer I get to it coming back and starting all over again. My blog title says it clearly. I do really feel like cancer caught me and now it won't let go of me and I can't break free from it.
My hubby is still in La La Land. It is amazing all the things we have NOT talked about since me being dx. All the things I need to talk to him about, all the things I need to say and have him say to me. I forced him to go to the last dr appt. He did not say one word during the appt. It was just like when I go to the dr appts by myself.
I am still having a very hard time being around friends because I just can't do that without melting down. I hope you all can forgive me and understand.
The good: My oldest son has been very helpful to me, he has watched the baby so many days when I have been so so tired and needed sleep and helps with so many chores. My Mr. Clean and Punpkin sons have been just so happy and I love it and their smiles. My Hercules son just amazes me with what he can do and learn and how tough he is but saddens me with how I can see he knows too much about me and cancer. My daughter is just a miracle and a little mommy to the baby. My baby is not acting so much like a baby anymore but more like a toddler exploring everything and not a day goes by that I don't think about him nursing. As of now I do really think I have enough donated breastmilk to get him to his birthday when he turns 2yrs old. It is an amazing act of kindness that made that possible.
I still feel the prayers of other and that is what truly keeps me going and I hope they never end.
The dr asks me how I am doing. I say, "I guess that will depend on what you say about the test results." he says, "They are fine except white blood cell and iron down but normal after having chemo." and then so quickly only enough time given to me to let out a sigh of relief that he turns the talk to surgery. Have I thought about doing it anymore? I say, "Of course, EVERY SINGLE DAY I think about surgery and how I would not have been able to do it. EVERY DAY something happens that shows me that." I am so trying to be happy and I am about the good test results but it is so hard when the drs are not so happy about it, like it doesn't matter that they came back good. They can't even relish in the fact that the tests come back good.
I hate that I can hardly remember the "before" anymore. It is hard to glimpse for even a moment the "before". What I hate even more is how I feel emotionally worse now the longer I am into this. I thought it would be the opposite. The bad sadness I felt in the beginning would get less but it hasn't. I think what has happened is in the beginning I was running on adrenaline and chemo and now I have crashed. The chemo has left my mind to think since I am not always so sick as a dog and the adrenaline has been used up since isn't the worst supposed to be over since I am not doing chemo and radiation now? Now I can think and farther away from treatment I get I feel like the closer I get to it coming back and starting all over again. My blog title says it clearly. I do really feel like cancer caught me and now it won't let go of me and I can't break free from it.
My hubby is still in La La Land. It is amazing all the things we have NOT talked about since me being dx. All the things I need to talk to him about, all the things I need to say and have him say to me. I forced him to go to the last dr appt. He did not say one word during the appt. It was just like when I go to the dr appts by myself.
I am still having a very hard time being around friends because I just can't do that without melting down. I hope you all can forgive me and understand.
The good: My oldest son has been very helpful to me, he has watched the baby so many days when I have been so so tired and needed sleep and helps with so many chores. My Mr. Clean and Punpkin sons have been just so happy and I love it and their smiles. My Hercules son just amazes me with what he can do and learn and how tough he is but saddens me with how I can see he knows too much about me and cancer. My daughter is just a miracle and a little mommy to the baby. My baby is not acting so much like a baby anymore but more like a toddler exploring everything and not a day goes by that I don't think about him nursing. As of now I do really think I have enough donated breastmilk to get him to his birthday when he turns 2yrs old. It is an amazing act of kindness that made that possible.
I still feel the prayers of other and that is what truly keeps me going and I hope they never end.
Thursday, April 14, 2011
Downer day
You just can't go by looks or time. I hate cancer! When will they find a cure??????? I just met a 29 yr old woman one week ago. She had just been dx 2 weeks with stage 4 breast cancer. She looked GREAT, YOUNG. She was JUST dx. She was fine how could she have cancer she seemed to think. She sat on the sofa wide eyed and shocked but ready for the fight ahead and like it would be all ok. I believed her, she was handling it all better than I was at the same dx point. I thought what a long road ahead of her. Then find out she died. It rocked me. I hate cancer, how can it do this??? None of the people I meet, the stories I read make any sense. It makes my head spin.
I have to write all I want to say to my kids. I have to write everything I want to teach them. Because no matter how good you look and the time the drs say they give you don't matter and something can just happen. Having cancer makes me feel so completely unsafe. It feels like a ticking time bomb except you don't see the numbers ticking down but you do know it is less numbers than the average person and it could go off at any time.
I met another person in real life with rectal cancer. She was older woman than me. She had been dx stage 3 like me, did the yada yada yada like you are supposed to do, they told her she had no cancer and then 1 yr since her dx it is now stage 4. Drs won't tell me I have no cancer despite all the tests coming back clean since I didn't do surgery like they wanted me to do. I wonder if it is harder to have them say no cancer and then just in a short time have the cancer come back. For me it would be. For me hearing it is back seems harder than the first dx of cancer. I don't think of myself as not having cancer even with the clean test results 1) because the drs don't think of me as no cancer 2)it seems like cancer just hides like a game of hide n seek just waiting for you to find it, it never really goes away in many cases it seems. So I consider mine hiding and I and the drs just can't see it right now. I hope it is longer than a year from my date of dx before I see it again. It is just one month until the day I was dx.
This whole post written through tears.
I have to write all I want to say to my kids. I have to write everything I want to teach them. Because no matter how good you look and the time the drs say they give you don't matter and something can just happen. Having cancer makes me feel so completely unsafe. It feels like a ticking time bomb except you don't see the numbers ticking down but you do know it is less numbers than the average person and it could go off at any time.
I met another person in real life with rectal cancer. She was older woman than me. She had been dx stage 3 like me, did the yada yada yada like you are supposed to do, they told her she had no cancer and then 1 yr since her dx it is now stage 4. Drs won't tell me I have no cancer despite all the tests coming back clean since I didn't do surgery like they wanted me to do. I wonder if it is harder to have them say no cancer and then just in a short time have the cancer come back. For me it would be. For me hearing it is back seems harder than the first dx of cancer. I don't think of myself as not having cancer even with the clean test results 1) because the drs don't think of me as no cancer 2)it seems like cancer just hides like a game of hide n seek just waiting for you to find it, it never really goes away in many cases it seems. So I consider mine hiding and I and the drs just can't see it right now. I hope it is longer than a year from my date of dx before I see it again. It is just one month until the day I was dx.
This whole post written through tears.
Monday, March 21, 2011
Neuropathy makes you feel crazy
This post comes because I left my house and went out into the world for a long day and was reminded again of how things are not normal.
This sums up the neuropathy that I have from the chemo that I got. It is funny that the dr didn't tell me I would have this after the chemo was done.
http://cancerissofunny.blogspot.com/2010/04/what-does-neuropathy-feel-like.html
Since I don't go anywhere I can sort live with it since now I am so used to being like this. At home I only walk very little and then can go sit down anytime I like. It is when I go out it hits me, Oh, yeah, I can't walk like everyone else and like I used to. The wheel chair is a blessing and a pain. Great since I can be out without a time limit but bad since I get these looks (I think because I am young and remember I LOOK SO GOOD!) but then I can't go out by myself since I can't push the kind of wheel chair I have really well by myself for long distances (I have the neuropathy in my fingers too but not as bad as my legs/feet).
My neuropathy makes me feel like my shoes are too tight, it makes me feel like things that are not there, it makes me hurt, it makes me feel nothing at all, it makes touching hurt and weird sensations, it makes me question and not trust what I feel or don't feel. It mostly makes me feel crazy. I hate walking slow, I hate walking like a duck and an old person, I hate looking normal and walking weird, I hate the looks, I hate that I don't know when this will and if this will go away. I pray this is what I will have to deal with, I will happily complain about having this. Can this be the only thing I have to deal with, pretty please.
This is just one of the hidden side effects of cancer that people can't see. I have other hidden side effects but would rather not share since they are icky and I do try my best to keep them hidden but it is hard and such an interference with my daily life. People can see and know that after the chemo, after the radiation, after the surgery there is a whole bunch of never ending side effects physically and emotionally that keeps you.
Chemo and radiation and surgery, the gift that keeps on giving except it doesn't always keep the cancer away.
This sums up the neuropathy that I have from the chemo that I got. It is funny that the dr didn't tell me I would have this after the chemo was done.
http://cancerissofunny.blogspot.com/2010/04/what-does-neuropathy-feel-like.html
Since I don't go anywhere I can sort live with it since now I am so used to being like this. At home I only walk very little and then can go sit down anytime I like. It is when I go out it hits me, Oh, yeah, I can't walk like everyone else and like I used to. The wheel chair is a blessing and a pain. Great since I can be out without a time limit but bad since I get these looks (I think because I am young and remember I LOOK SO GOOD!) but then I can't go out by myself since I can't push the kind of wheel chair I have really well by myself for long distances (I have the neuropathy in my fingers too but not as bad as my legs/feet).
My neuropathy makes me feel like my shoes are too tight, it makes me feel like things that are not there, it makes me hurt, it makes me feel nothing at all, it makes touching hurt and weird sensations, it makes me question and not trust what I feel or don't feel. It mostly makes me feel crazy. I hate walking slow, I hate walking like a duck and an old person, I hate looking normal and walking weird, I hate the looks, I hate that I don't know when this will and if this will go away. I pray this is what I will have to deal with, I will happily complain about having this. Can this be the only thing I have to deal with, pretty please.
This is just one of the hidden side effects of cancer that people can't see. I have other hidden side effects but would rather not share since they are icky and I do try my best to keep them hidden but it is hard and such an interference with my daily life. People can see and know that after the chemo, after the radiation, after the surgery there is a whole bunch of never ending side effects physically and emotionally that keeps you.
Chemo and radiation and surgery, the gift that keeps on giving except it doesn't always keep the cancer away.
Friday, March 18, 2011
There's always something unexpected!
Can't things ever turn out how you think they will??
Nope!
Thought I was just going back to the gyn for a follow biopsy-- but it didn't end there! First, she was GREAT! I think she gets where I am coming from. After I told her about the chemo dr appt (thought she should know I wouldn't be getting a CT scan), she got me in RIGHT THEN to another chemo dr! Amazing! But of course it scared the heck out of me since I was not prepared for that at that moment. And I have been dreading trying to find another chemo dr. It is so draining to actually do it and even just the thought of going to another dr appt is really getting to me. Appts and drs are so draining and such a downer on me. I just want a break. But no break. (I have 4 dr appts for the month of April!)
Thankfully, I had my friend with me who is on the short list to sainthood for coming to a super early morning appt and then staying even longer for another unexpected appt all the while with a toddler in tow (who was perfect). Thank you Saint Natalie (and Anna)!
Even though the new chemo dr appt went ok it was very, very stressful for me. The good news is he would give me a ct scan and proper follow up. I also learned that I was discussed at the tumor/cancer board meeting by all the drs, so all the local drs now know what a pain in the *ss I am! LOL The difficult patient that won't just follow along with them. So good to know how much harder it would have been to find a chemo dr if it wasn't for my gyn dr taking it upon herself to get me to see one. Plus, they would know immediately that it was me (even though they don't use names) since who else would have a rare cancer at a young age. Turns out my new chemo dr actually questioned why I was having this "full surgery" and perhaps I could do half the surgery. Nope, they all jumped on him for that comment. Oh, no, you don't do that, she's a T4 tumor!
So here's the big curve ball thrown during the unexpected dr appt and the last thing I was thinking when I went to meet him. His idea is to call the GI drs and ask if they would do half of the surgery. I am thrown for a loop when he says this and thrown into panic mode, and I am still in panic mode whenever I think (write) about it. Just when I thought I had made a decision about surgery now it could be back on the table. I did ask the GI dr if he would do half of the surgery way back when and he told me no but of course it was ME asking, maybe another dr asking is different.
Well, now I am just in an unknown zone waiting for a biopsy result, waiting to hear what the GI dr said about half surgery, wondering what will I do and wondering how I could do it all. And basically feeling like my life is always falling apart and just wanting a break from this all for a little bit. No, a long bit. It stinks just as one of my kids is getting counseling over this stupid cancer thing and the counselor had just reported "I think he is doing ok and now with everything settling down too it will help him", yeah, right, now it could be possibly thrown into more chaos again. My family's world is a mess and stressful and never stopping. I need a break but you can't get a break--something always happens.
Nope!
Thought I was just going back to the gyn for a follow biopsy-- but it didn't end there! First, she was GREAT! I think she gets where I am coming from. After I told her about the chemo dr appt (thought she should know I wouldn't be getting a CT scan), she got me in RIGHT THEN to another chemo dr! Amazing! But of course it scared the heck out of me since I was not prepared for that at that moment. And I have been dreading trying to find another chemo dr. It is so draining to actually do it and even just the thought of going to another dr appt is really getting to me. Appts and drs are so draining and such a downer on me. I just want a break. But no break. (I have 4 dr appts for the month of April!)
Thankfully, I had my friend with me who is on the short list to sainthood for coming to a super early morning appt and then staying even longer for another unexpected appt all the while with a toddler in tow (who was perfect). Thank you Saint Natalie (and Anna)!
Even though the new chemo dr appt went ok it was very, very stressful for me. The good news is he would give me a ct scan and proper follow up. I also learned that I was discussed at the tumor/cancer board meeting by all the drs, so all the local drs now know what a pain in the *ss I am! LOL The difficult patient that won't just follow along with them. So good to know how much harder it would have been to find a chemo dr if it wasn't for my gyn dr taking it upon herself to get me to see one. Plus, they would know immediately that it was me (even though they don't use names) since who else would have a rare cancer at a young age. Turns out my new chemo dr actually questioned why I was having this "full surgery" and perhaps I could do half the surgery. Nope, they all jumped on him for that comment. Oh, no, you don't do that, she's a T4 tumor!
So here's the big curve ball thrown during the unexpected dr appt and the last thing I was thinking when I went to meet him. His idea is to call the GI drs and ask if they would do half of the surgery. I am thrown for a loop when he says this and thrown into panic mode, and I am still in panic mode whenever I think (write) about it. Just when I thought I had made a decision about surgery now it could be back on the table. I did ask the GI dr if he would do half of the surgery way back when and he told me no but of course it was ME asking, maybe another dr asking is different.
Well, now I am just in an unknown zone waiting for a biopsy result, waiting to hear what the GI dr said about half surgery, wondering what will I do and wondering how I could do it all. And basically feeling like my life is always falling apart and just wanting a break from this all for a little bit. No, a long bit. It stinks just as one of my kids is getting counseling over this stupid cancer thing and the counselor had just reported "I think he is doing ok and now with everything settling down too it will help him", yeah, right, now it could be possibly thrown into more chaos again. My family's world is a mess and stressful and never stopping. I need a break but you can't get a break--something always happens.
Thursday, March 10, 2011
So done
It's been a whole pregnancy since I have been dx with cancer and I feel like a pregnant woman who is at the end of the pregnancy and is ready for it to be over. I am so ready for cancer to be over. I sick of dealing with it. I am so sick of going to the doctors. That always brings me down and back to reality. Around everyone else all seems well, look at all the good test results. You all can be happy about it and rejoice. But I go to the doctor and there is no rejoicing just dread from them. Cancer will never be over unlike a pregnancy that will end with a happy little baby. Cancer never ends and when it does end, it really is the end.
So why the horrible downer of a blog post. Because of the horrible chemo dr appt. Just when I think all is well, I made my decision to not have surgery and planning all the follow up with the gi and gyn and now all that was left is to go to the chemo dr follow up appt and then he re hashes the no surgery decision. He veils it in "it's your choice" in his fakey voice and condescending tone. It's my choice to not have surgery but now I will not get the follow up that any other person would get since I didn't have surgery and that I can't promise him I would have surgery if it comes back. Well, so sorry if I can't promise you something about the future, I don't do that. I just don't get this dr. I would not treat a mom I was helping the way I have been treated. If a mom comes to me and I know she has low milk supply (and she knows it too). She says she wants to increase her supply and nurse her baby. I tell her a,b,c,x,y,z is what she needs to do but she only wants to do a,b,c. I don't belittle her. I tell her why it is important to do it all and the consequences of not doing it all etc but I let her decided what she wants to do and I support her best I can even if it is not what I would do or what I think she should do. It is her decision not mine. She will have to live with that decision. I don't. She knows what she is able to do. I don't tell her to promise me she'll do x,y,z if only doing a,b,c doesn't work. I trust this mom, I respect her, it is her life not mine.
I am sick of it all!
I am down about another mom who has this stupid, stupid cancer. She is starting chemo again. I remember saying give me more chemo in response to I would rather have chemo than surgery. Well, when I heard she was going to have to do more chemo a horrible dread feeling came over me. All those feelings and memories of the chemo came flooding back. I hate that she has to go through this. I hate knowing that might be me too. I just want to have cancer be done but it feels like it never will be. I will always have to deal with this.
I want to "move on" and get back to "normal life". Yeah, right, that can never happen. I am trying to not be down and trying to not think of cancer and what it means but it always comes back to my mind. The worst is the thought of not being here for my kids. I HATE that thought, that is the thing that gets me every time.
Ok, let's at least end this post on good things.
I really am so thankful and happy with how well (say a prayer) things are going with the cancer being in remission right now. So despite my rantings know this. It's just those dang drs who keep bringing me down so it is hard to stay happy.
I am also SO SO SO SO SO amazed that Trooper still has breastmilk from a super fab mom who has continued to provide milk for him. Trooper had been sick twice and I am sure he would have been in the hospital if it wasn't for the milk she has given to him. It kept him hydrated and provided calories when he wasn't eating anything. I just want to say it over and over and over again about what this has meant to me. It has been huge and brings me such peace and comfort.
So why the horrible downer of a blog post. Because of the horrible chemo dr appt. Just when I think all is well, I made my decision to not have surgery and planning all the follow up with the gi and gyn and now all that was left is to go to the chemo dr follow up appt and then he re hashes the no surgery decision. He veils it in "it's your choice" in his fakey voice and condescending tone. It's my choice to not have surgery but now I will not get the follow up that any other person would get since I didn't have surgery and that I can't promise him I would have surgery if it comes back. Well, so sorry if I can't promise you something about the future, I don't do that. I just don't get this dr. I would not treat a mom I was helping the way I have been treated. If a mom comes to me and I know she has low milk supply (and she knows it too). She says she wants to increase her supply and nurse her baby. I tell her a,b,c,x,y,z is what she needs to do but she only wants to do a,b,c. I don't belittle her. I tell her why it is important to do it all and the consequences of not doing it all etc but I let her decided what she wants to do and I support her best I can even if it is not what I would do or what I think she should do. It is her decision not mine. She will have to live with that decision. I don't. She knows what she is able to do. I don't tell her to promise me she'll do x,y,z if only doing a,b,c doesn't work. I trust this mom, I respect her, it is her life not mine.
I am sick of it all!
I am down about another mom who has this stupid, stupid cancer. She is starting chemo again. I remember saying give me more chemo in response to I would rather have chemo than surgery. Well, when I heard she was going to have to do more chemo a horrible dread feeling came over me. All those feelings and memories of the chemo came flooding back. I hate that she has to go through this. I hate knowing that might be me too. I just want to have cancer be done but it feels like it never will be. I will always have to deal with this.
I want to "move on" and get back to "normal life". Yeah, right, that can never happen. I am trying to not be down and trying to not think of cancer and what it means but it always comes back to my mind. The worst is the thought of not being here for my kids. I HATE that thought, that is the thing that gets me every time.
Ok, let's at least end this post on good things.
I really am so thankful and happy with how well (say a prayer) things are going with the cancer being in remission right now. So despite my rantings know this. It's just those dang drs who keep bringing me down so it is hard to stay happy.
I am also SO SO SO SO SO amazed that Trooper still has breastmilk from a super fab mom who has continued to provide milk for him. Trooper had been sick twice and I am sure he would have been in the hospital if it wasn't for the milk she has given to him. It kept him hydrated and provided calories when he wasn't eating anything. I just want to say it over and over and over again about what this has meant to me. It has been huge and brings me such peace and comfort.
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