I have not been back to Gilda's Club (cancer support group) for many weeks now. I have been trying many things to "get over" this cancer and that was one of them, especially since a friend there was taken away. After an email and a call from a friend there, and I do miss them, I decided to go yesterday. I had not expected to see the husband of the friend that was taken away. It threw me for a loop. Remember my previous post/plan to just think of her as just someone I don't see anymore and then seeing her husband and her dog (she always had her cute lap dog with her) and her dog went to the chair where she always sat. Just another reminder that she is really gone. I also met a another with colon cancer who is in her thirties she was dx right after she gave birth and her baby is close to Trooper's age. It still shocks me every time I hear of someone else with this cancer.
Going there does not make me feel worse than when I do not go. It does not matter how far I run or how long I stay away from cancer places it is always there. At least there I do not feel alone. I really feel like I have PTSD (post traumatic stress disorder) from this. It is so weird to describe and I am not sure if you haven't been there you might not understand. I don't think I would if someone told me this. You would think she is done with treatments right now and tests are ok right now so be happy (I am for that) BUT with that now comes the hitting of what you have just been through and how that has forever changed you and the mental and physical scars that are left with you. And you can't get back to where you were before this.
There is this pressure to live life perfectly (since you have cancer and you might die), live life to the fullest, no regrets, do all you want to, be happy, don't sweat the small stuff, make every day/moment count yadda yadda yadda and all those "great" sayings. And of course I fail because real life gets in the way and doesn't care you are trying to live some great life now and just sucks you back down in the middle of stupid things.
Ok, so I give up on that since it is impossible and try and just go back to the old life, yet really I can't but I try and pretend and then I am mad about that since it really is only pretending and I can't pretend for very long. Cancer always comes to mind, and having dr appts doesn't really help! FYI, will be having another scope on Monday, totally caught me off guard when the dr said that, so now stressing about it, and not the procedure but the results of it. I really feel like I live dr appt to dr appt saying your ok for right now. Well, at at least that is what I say! The dr of course reminds that I have cancer. yeah, because I might forget I have cancer!
It is like this movie I saw (b.c.--before cancer) about a soldier who comes home from war. He is messed up mentally and his friends and family just don't understand. They think he should be happy that he made it out of the war alive when his friends didn't and why is he so messed up and why can't he be back to normal what happened to the person they knew.
I am happy for how I am doing right now but this is *still* hard to deal with and what I may have to deal with in the future.
I think everyday when I wake it will be ok and I will be alive for my kids and then it feels like I am asking and praying to win the health lotto. It just seems too much to hope for and too much to ask for. Why would I get the lucky health ticket.
Thursday, August 25, 2011
Thursday, August 11, 2011
Taken away
A friend was taken away. I knew and I was told that it was close. Her dr was correct in the time he gave that was left. But still I just couldn't really believe it would come....because she looked physically ok, but her face showed a sadness, a far off stare the last few times I saw her. Her visitation was today I did not go, her is funeral tomorrow, I will not go. I hope that doesn't sound mean but I just can't do it. If I went I would have to be strong and cold as not to break down and flip out, which would be a real possibility, just being there and seeing it all and hearing it all, it is too close to me, too real. Not going allows to have her be a friend I just don't see anymore rather than a friend that I see that is for sure gone.
I have only been to a few funerals in my life. When I was a young child my grandpa died. At the time his death didn't effect me hugely, I thought he was old and thought that is what happens. Now I know he was young, only in his 50's and died of cancer. What did effect me was that in the room over from his viewing was a service for a little girl. That was the first time I realized kids die. My next funeral was for my Granny. I was so sad she died because I had really knew her for a long time and she had made a huge impression on me. Though I was sad I was so happy for her because she told she would be going to heaven. The other funeral I went to was for a young mom who died of cancer, she left 2 little boys. It still didn't hit me, I was sad for them and her but it never made me think it could be me. But now having cancer has made me see it could be me and it is too hard to face that and see it with my eyes and not flip out since I know I am so much closer to it than any of the other times I went to a funeral. Before cancer, you know you can die but now you know in a much more real way you can die, you feel so much closer to it and I just would rather look away. And yet every day since dx I can't escape not even one day that I don't think about death. I now wonder how people can just not even have it cross their mind for days and months on end. I just can't seem to get back to that place when death never entered my mind even when faced with a funeral.
To my friend taken away, thank you for sharing your last year with me.
I have only been to a few funerals in my life. When I was a young child my grandpa died. At the time his death didn't effect me hugely, I thought he was old and thought that is what happens. Now I know he was young, only in his 50's and died of cancer. What did effect me was that in the room over from his viewing was a service for a little girl. That was the first time I realized kids die. My next funeral was for my Granny. I was so sad she died because I had really knew her for a long time and she had made a huge impression on me. Though I was sad I was so happy for her because she told she would be going to heaven. The other funeral I went to was for a young mom who died of cancer, she left 2 little boys. It still didn't hit me, I was sad for them and her but it never made me think it could be me. But now having cancer has made me see it could be me and it is too hard to face that and see it with my eyes and not flip out since I know I am so much closer to it than any of the other times I went to a funeral. Before cancer, you know you can die but now you know in a much more real way you can die, you feel so much closer to it and I just would rather look away. And yet every day since dx I can't escape not even one day that I don't think about death. I now wonder how people can just not even have it cross their mind for days and months on end. I just can't seem to get back to that place when death never entered my mind even when faced with a funeral.
To my friend taken away, thank you for sharing your last year with me.
Thursday, July 21, 2011
To Lisa, the Dancer
I am posting this to Lisa, the dancer, in hopes that she may see this post. I have been reading your blog and have tried unsuccessfully to post a comment on your site. Not sure if it is me or you have comments turned off. Lisa, the dancer, I stumbled upon your blog and was so sosad to see yet another young woman have this horrible cancer. From your postings you sound strong and determined and so mature beyound your 26 years. I was really upset that you have had a recurrence so soon after finishing treatment. I was dx one month after you were and that is always on my mind. I just wanted to let you know you are not alone and I wish you nothing but the best and that you can continue to find strength and support to fight every day. I frequently read (hardly post though) on colonclub.com it is a great site with other young people who have this stupid type of cancer and I found it helpful to read and get information. Another good blog to read is http://imsorryforcursing.blogspot.com/
(Sheri, I hope it is ok to share this!)Thinking of both you daily, Sheri and Lisa!
(Sheri, I hope it is ok to share this!)Thinking of both you daily, Sheri and Lisa!
Wednesday, July 6, 2011
Saturday, June 18, 2011
Life is for the living
A song someone shared with me and wanted to share:
http://ryanmichaelsband.com/fr_lifeisfortheliving
So much going on since I last posted, have wanted to write but so busy living through the good times and bad thoughts that still plague me. BUT I am living! Hoping all can be old! Now I look at old people and find it absolutely amazing that they reach such an age!
http://ryanmichaelsband.com/fr_lifeisfortheliving
So much going on since I last posted, have wanted to write but so busy living through the good times and bad thoughts that still plague me. BUT I am living! Hoping all can be old! Now I look at old people and find it absolutely amazing that they reach such an age!
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.
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