Tuesday October 16, 2007
Okay, Ya know what...I got a date. No goofy not that kind of date, I'm married. I got a date for my Surgery! Yaaaayyyy! No more waiting and no more wondering! I have a date and things are mooooving forward. Yay Yay Yay!
The dates are, drum roll please...........Consult on the 31st(Yes, that would be Halloween :( )
and surgery on Nov. 2nd.
K, now how often when we are given dates for things do they ever work out to be the best possible choices, Never! So with that thought in mind I was going to be open minded about it. After all can you really argue over the perfectness of the dates for a very serious and possibly life preserving surgery? Ha, the answer would be yes. Why, because we are human and we like things to be a certain way. But even you ya say, even after all this. And of course the answer is still yes. Why, same reason...because I am still human. Although cancer can have a tendency to make you feel subhuman at times. you really aren't , you will always be human no mater what! Having cancer also didn't make me become a super perfect human being like some may suspect it would. I am still just me. I do look at a lot of things differently now, not really differently. I have always been an open, honest, caring, hard working, giving, generous and loving person all of my life. I just look at things differently and my priorities, it is like I have a different feeling about them. I mean they really can't change that much...my priorities have always been good ones: God, My family, husband, children, pets and my home. I just look at achieving them differently I guess. My time has become more precious to me: seconds, minutes, hours, days, weeks and almost feel more of a sense of urgency about some things and a sense of unimportance on other things that I probably would have used to have spent more time on or atleast been stressed out about more. I suppose being in Chicago on Halloween won't be sooo bad. It could be worse, like later. It could have been on Thanksgiving or over Christmas! I can think of much worse than having to be gone on Halloween, like having to be gone forever never having had the surgery in time!!! Now see that's when I am sold on whatever date is the quickest!!! Now, that's something ya really can't argue with! I can see it, I know this answer you just don't always feel it! That's what I meant in the other blog about sometimes your feelings inside are just different. That's a good example of what I meant!
Anyway,
Time to notify everyone about the surgery dates. I know everyone will be excited like me about finally having dates set! I think I will rest a bit better with having this information!
Lately I have been a bit more stressed than usual. Not really sure why. Have been trying to think on it and look into it but I am not coming up with any answers. If I say anything to anyone else about times like this people have a tendency to say things lie "of course you are, you have a lot on your plate. You're a mom and you have to deal with this Cancer, I don't know how you're doing it. I don't think I could do it and especially wouldn't be able to be as positive and brave about it as you have been."
Then I could just answer by "nodding my head and saying, "well, it is just what I have to do, I don't have any other choice really".
So see I just basically had the conversation all by myself with most of my friends. Oh especially if I tell myself "Things will get better I am sure, it's okay".
Okay, now back to what I was saying...I don't know why I am , when I figure it out I'm sure you will be the next to know after me!
My usual stressors:
Having a lot of tasks to do at once (being in the weeds
), being sick, Finances, Security, plans not working out
after diagnosis stressors:
Is the cancer going to spread, will something happen to me before I get this tumor out of me, Am I going to be around to see all of my children grow up and go off to college. Will I see them marry and have grand-children first too, or is that being selfish of me and asking for too much for myself?, will my family make it alright without me and be on the same path they were on before anything happened to me, will I affect their life too much in a negative way.
okay, wanted to jot them down, so when I do figure it out I can look back and see if I already knew the answer all along! Ugh, right now I feel like crying. The after diagnosis stressors list got to me. Possibly one of those things then. Ha, maybe we are halfway finished with figuring out the what is going on with me lately issues!
Tuesday, October 16, 2007
I'm having surgery. again...Again!
October Thurs. 11, 2007
Okay, an writing this on Wed Oct 17, 2007 (12:25 am) from TC Thompsons Children's Hospital ER. I am here with Marley she has pretty bad abdominal pain. Thank the Lord there were no vomiting sick children in the waiting area.!! Yaaayyyy! Actually we were the only people in the the ER waiting area. Now that is a miracle!
Okay, We heard back from Dr. Agulnik today. He had attended the thoracic surgeons meeting this past Wednesday and the general consensus was to do surgery to remove the tumor from my lung. So we needed to cal Dr. De Hoyas' office and schedule the surgery in Chicago, at Northwestern Univ.
Wow, what a whirlwind to go through. I feel like I just got thrown out of the funnel of a tornado. Just going round and round and round waiting to be thrown into a certain direction. Well, now, once again we feel as if we have the direction set for us and we are starting down the path of planning ahead. Now if it will just stay the same direction, I'll feel more than great about it. But I am certain it will this time. Surgery...no turning back. So let's all jump onto the surgery bandwagon and be excited about it. Maybe there is a class called tumor removal surgeries do' and don'ts. Maybe I should write a blog about that as I go. Hey, that could be a good thing. Since I am going to be going through the ups, successes with it and the downs, pitfalls of it all I might as well write about it and maybe others can learn from my situation. Ok, now I feel like I have something to go through surgery for, well, like I needed something more than living longer. Oh that is funny how we look at things sometimes. Well not really how we look at things but more like how we feel about things. Ha, The good Lord made us all and we each have different things that make us tick a different way! Now isn't that something wonderful and amazing! I think it is! Now about the surgery I am just repeat a million times to myself: I know I can I know I can I know I can, that is really all I can do since the rest is up to God!
Love love love
Me
Okay, an writing this on Wed Oct 17, 2007 (12:25 am) from TC Thompsons Children's Hospital ER. I am here with Marley she has pretty bad abdominal pain. Thank the Lord there were no vomiting sick children in the waiting area.!! Yaaayyyy! Actually we were the only people in the the ER waiting area. Now that is a miracle!
Okay, We heard back from Dr. Agulnik today. He had attended the thoracic surgeons meeting this past Wednesday and the general consensus was to do surgery to remove the tumor from my lung. So we needed to cal Dr. De Hoyas' office and schedule the surgery in Chicago, at Northwestern Univ.
Wow, what a whirlwind to go through. I feel like I just got thrown out of the funnel of a tornado. Just going round and round and round waiting to be thrown into a certain direction. Well, now, once again we feel as if we have the direction set for us and we are starting down the path of planning ahead. Now if it will just stay the same direction, I'll feel more than great about it. But I am certain it will this time. Surgery...no turning back. So let's all jump onto the surgery bandwagon and be excited about it. Maybe there is a class called tumor removal surgeries do' and don'ts. Maybe I should write a blog about that as I go. Hey, that could be a good thing. Since I am going to be going through the ups, successes with it and the downs, pitfalls of it all I might as well write about it and maybe others can learn from my situation. Ok, now I feel like I have something to go through surgery for, well, like I needed something more than living longer. Oh that is funny how we look at things sometimes. Well not really how we look at things but more like how we feel about things. Ha, The good Lord made us all and we each have different things that make us tick a different way! Now isn't that something wonderful and amazing! I think it is! Now about the surgery I am just repeat a million times to myself: I know I can I know I can I know I can, that is really all I can do since the rest is up to God!
Love love love
Me
Saturday, October 6, 2007
From NO phone calls to NO phone!
Tuesday October 2, 2007 (writing on Saturday 6 looking back from memory)
Well Dr. Agulnik never returned the call Yesterday. It happens!
What else, Still feeling rotten! Nauseous all the time 24/7.
I try not to stress at all. There is nothing to stress about! Everything is in God's hands and he will take care of it all. Roaming surgery schedules, Dr. visits, opinions and plans and even how I feel about it!
Sometimes for a few moments thoughts start crossing my mind like that I need to read more about it and research it (this would be compulsively, not in a healthy way, almost like in desperation!) Then I will feel like I am not in control of it and it begins to scare me a little because I don't have any say so or control over my life right now. As we all know, this is not a fun place to spend your time, emotionally speaking! Then I tell myself NO! NO! NO! You are not going to do this at ALL! Not even for one second! God is in charge, not you, so get over it! He can do a much better job of it than you can! Then the thoughts, insecurities and fears melt away...I never have spent much time here at all ever since the beginning. It is just recent that these feelings have even came to exist. I know that it is because things aren't progressing as quickly as I had hoped for. I do know, however, that everything will happen when it is suppose to! In God's time. If I were to jump into this with guns blazing that somehow I just know I could mess it all up!
As I see it he is much more qualified to deal with it then I am and here are the reasons why:
1. He gave me life, he can obviously do with it whatever he wishes!
2. He wants what is best for me, more so than any human being could even begin to comprehend!
3. He is my Father and fathers take care of their children and would never steer them wrong.
4. He knows how things will go and has already decided
5. He will always be with me no matter what and will never leave my side!
6. He has been through cancer before, more times than I can even count! Which makes him the Ultimate Expert!
7. I don't have to go through it alone ever! He will carry me through it and has been since before I even found out this cancer existed inside of me!
There are tons more reasons here but I think this gives the main gist of how I feel!
The only time I even begin to fall apart even the slightest is when I think about my future and my children and their future! Because I want more than anything I have ever wanted in my life, to be in it with them! I have always wished for that and prayed about it, that God would allow me a long lifetime to see my children grow up and to see them start their families and to have Grandchildren! Ever since I found out I was pregnant with Marley it has always been a fear of mine that I wouldn't live to see her grow up and it worsened after I had 3 children to think about! I don't know if it is just me or all mothers that have that fear. For the most part it seemed kind of a senseless fear, not totally irrational though. Of course a mother wants to live to raise her children and to have Grandchildren and all. The thought of it would just really tear me up from time to time though. It makes me wonder if somehow I just knew something would happen that could take it all away from me.
You know how they say sometimes people just know what their future will be way before they ever even get to it and they kind of live differently because of it, never realizing it of course, until it happens. I feel like you could say that about me if it happened that way. I always put my children first. I have spent all of my time with my children since I had them. I din't work outside of the house knowing that the time I spent with them was more important than anything else I could ever accomplish in life. I have truly cherished almost every moment and everyday that I have had with them, like really cherished. I thank God everyday I wake up and see my children just for the simple fact that I have my children in my life. The fact that i have my children has always completed me. I could have never wanted anything else more than I wanted each of them! I conciously think these things all of the time. I constantly tell my children how I feel about them and several times a day give them lots of kisses and hugs! These types of things. I don't see all mothers doing this. I do though and I even think about these things on a daily basis. This is what I am talking about! I guess maybe someday I will know and today I will just keep thanking God for everyday he gives me with my children!
* Aside 1 - Marley texted me from school from someone else's phone...because she loaned hers to a girl named Megan at school and Megan told her that the phone got taken up by some teacher, which one? The really large one she said! Now that we know that was all a lie I think every really large lady everywhere should be highly offended and outraged, I tell you, OUTRAGED! What a little sneak! I am thankful for my children that I was blessed with to raise. I will be adding Megan to my prayer list! This upset me a lot!
This is how I contact Marley in case of an emergency! She is also my first contact for my other two children as well! If something were to happen and George was with me I would need to call her and have her get her brother and sister and she would have to make arrangements for them to stay with friends or family through whatever would be going on. Also if things were to not go so well I would be able to contact her immediately to talk with her. I would want this for her and for myself if I ever thought my life was coming to an end. I am not upset with Marley, she made a simple mistake. She misjudges someones intentions and their character. Even us adults get caught of guard with that from time to time! She is still a child and she is learning all of these lessons for the first time. I know she would never let this happen again after all this! Which is how children learn, from experience. As long as she does learn the lesson she is exactly where she should be in life. Living, learning and growing. Nothing more, nothing less!
*Aside 2 - Melanie made the Middle school soccer team! Yaaay! Go Mel!!!!!
Well Dr. Agulnik never returned the call Yesterday. It happens!
What else, Still feeling rotten! Nauseous all the time 24/7.
I try not to stress at all. There is nothing to stress about! Everything is in God's hands and he will take care of it all. Roaming surgery schedules, Dr. visits, opinions and plans and even how I feel about it!
Sometimes for a few moments thoughts start crossing my mind like that I need to read more about it and research it (this would be compulsively, not in a healthy way, almost like in desperation!) Then I will feel like I am not in control of it and it begins to scare me a little because I don't have any say so or control over my life right now. As we all know, this is not a fun place to spend your time, emotionally speaking! Then I tell myself NO! NO! NO! You are not going to do this at ALL! Not even for one second! God is in charge, not you, so get over it! He can do a much better job of it than you can! Then the thoughts, insecurities and fears melt away...I never have spent much time here at all ever since the beginning. It is just recent that these feelings have even came to exist. I know that it is because things aren't progressing as quickly as I had hoped for. I do know, however, that everything will happen when it is suppose to! In God's time. If I were to jump into this with guns blazing that somehow I just know I could mess it all up!
As I see it he is much more qualified to deal with it then I am and here are the reasons why:
1. He gave me life, he can obviously do with it whatever he wishes!
2. He wants what is best for me, more so than any human being could even begin to comprehend!
3. He is my Father and fathers take care of their children and would never steer them wrong.
4. He knows how things will go and has already decided
5. He will always be with me no matter what and will never leave my side!
6. He has been through cancer before, more times than I can even count! Which makes him the Ultimate Expert!
7. I don't have to go through it alone ever! He will carry me through it and has been since before I even found out this cancer existed inside of me!
There are tons more reasons here but I think this gives the main gist of how I feel!
The only time I even begin to fall apart even the slightest is when I think about my future and my children and their future! Because I want more than anything I have ever wanted in my life, to be in it with them! I have always wished for that and prayed about it, that God would allow me a long lifetime to see my children grow up and to see them start their families and to have Grandchildren! Ever since I found out I was pregnant with Marley it has always been a fear of mine that I wouldn't live to see her grow up and it worsened after I had 3 children to think about! I don't know if it is just me or all mothers that have that fear. For the most part it seemed kind of a senseless fear, not totally irrational though. Of course a mother wants to live to raise her children and to have Grandchildren and all. The thought of it would just really tear me up from time to time though. It makes me wonder if somehow I just knew something would happen that could take it all away from me.
You know how they say sometimes people just know what their future will be way before they ever even get to it and they kind of live differently because of it, never realizing it of course, until it happens. I feel like you could say that about me if it happened that way. I always put my children first. I have spent all of my time with my children since I had them. I din't work outside of the house knowing that the time I spent with them was more important than anything else I could ever accomplish in life. I have truly cherished almost every moment and everyday that I have had with them, like really cherished. I thank God everyday I wake up and see my children just for the simple fact that I have my children in my life. The fact that i have my children has always completed me. I could have never wanted anything else more than I wanted each of them! I conciously think these things all of the time. I constantly tell my children how I feel about them and several times a day give them lots of kisses and hugs! These types of things. I don't see all mothers doing this. I do though and I even think about these things on a daily basis. This is what I am talking about! I guess maybe someday I will know and today I will just keep thanking God for everyday he gives me with my children!
* Aside 1 - Marley texted me from school from someone else's phone...because she loaned hers to a girl named Megan at school and Megan told her that the phone got taken up by some teacher, which one? The really large one she said! Now that we know that was all a lie I think every really large lady everywhere should be highly offended and outraged, I tell you, OUTRAGED! What a little sneak! I am thankful for my children that I was blessed with to raise. I will be adding Megan to my prayer list! This upset me a lot!
This is how I contact Marley in case of an emergency! She is also my first contact for my other two children as well! If something were to happen and George was with me I would need to call her and have her get her brother and sister and she would have to make arrangements for them to stay with friends or family through whatever would be going on. Also if things were to not go so well I would be able to contact her immediately to talk with her. I would want this for her and for myself if I ever thought my life was coming to an end. I am not upset with Marley, she made a simple mistake. She misjudges someones intentions and their character. Even us adults get caught of guard with that from time to time! She is still a child and she is learning all of these lessons for the first time. I know she would never let this happen again after all this! Which is how children learn, from experience. As long as she does learn the lesson she is exactly where she should be in life. Living, learning and growing. Nothing more, nothing less!
*Aside 2 - Melanie made the Middle school soccer team! Yaaay! Go Mel!!!!!
Hold that surgery...again?!
Monday 1, 2007
Dr. Agulnik called this afternoon!
The pathology report is back. It confirmed the diagnosis of synovial sarcoma. They also said it was very susceptible to chemotherapy.
He stated that he wanted us to come back up to Chicago for 3 months of chemotherapy. We were still of the mindset that we were going to be doing a surgery! So, it was like say what? The only certain thing about cancer is that every detail about it is uncertain and plans change almost daily. Just when you get in the mindset of one thing the Doctors say, then it quickly changes to something else! I thought I was used to that already and had learned to just go with the everchanging flow of it all. This time though I didn't do so well with that. I think because it has been almost two months from the diagnosis and I am ready to do something, anything about it really! I'm not against operating on myself ya know! Yeah, don't think I'd need surgery if I was willing to that, Can you say straight jacket?
Anyway, He said he would call back later and we could all talk more about it. So we'll see!
Have no idea about the stage yet. Wow, didn't even think about it at all. Crazy huh? I guess since that was the first thing I wanted to know right from the start and it wasn't going to be able to be answered for quite awhile, so I guess I pushed it out of my mind figuring when they knew I was certain they would tell me! I am just hoping for the best and praying about it. I'm not going to sweat the small stuff and in the big picture it is almost ALL small stuff, even now still! Never thought in a million years that if I had cancer that I would think that way about any detail about it. But I do. That comes from an unrelenting faith that God has a better plan for my life. Why better? why now say better? Because God wants good for everyone, including me! So...it has to be better, whatever it is, right? Right! Is it just that simple really? Yes, I answer that with an emphatic YES!
So we are waiting to hear more............................................
Dr. Agulnik called this afternoon!
The pathology report is back. It confirmed the diagnosis of synovial sarcoma. They also said it was very susceptible to chemotherapy.
He stated that he wanted us to come back up to Chicago for 3 months of chemotherapy. We were still of the mindset that we were going to be doing a surgery! So, it was like say what? The only certain thing about cancer is that every detail about it is uncertain and plans change almost daily. Just when you get in the mindset of one thing the Doctors say, then it quickly changes to something else! I thought I was used to that already and had learned to just go with the everchanging flow of it all. This time though I didn't do so well with that. I think because it has been almost two months from the diagnosis and I am ready to do something, anything about it really! I'm not against operating on myself ya know! Yeah, don't think I'd need surgery if I was willing to that, Can you say straight jacket?
Anyway, He said he would call back later and we could all talk more about it. So we'll see!
Have no idea about the stage yet. Wow, didn't even think about it at all. Crazy huh? I guess since that was the first thing I wanted to know right from the start and it wasn't going to be able to be answered for quite awhile, so I guess I pushed it out of my mind figuring when they knew I was certain they would tell me! I am just hoping for the best and praying about it. I'm not going to sweat the small stuff and in the big picture it is almost ALL small stuff, even now still! Never thought in a million years that if I had cancer that I would think that way about any detail about it. But I do. That comes from an unrelenting faith that God has a better plan for my life. Why better? why now say better? Because God wants good for everyone, including me! So...it has to be better, whatever it is, right? Right! Is it just that simple really? Yes, I answer that with an emphatic YES!
So we are waiting to hear more............................................
Monday, October 1, 2007
nausea is it so or is it noooo
Nausea. It is a relatively small word apparently. It means a lot to me though considering I go through waves of nausea all day everyday. Apparently I am not suppose to be having nausea. Has modern medicine not advanced far enough to understand that if a patient is nauseas that there is a reason for it. The answer is apparently No, it has not. And frankly it makes nauseas. Ha! Makes me think of the movie "The Doctor" with William Hurt 1991. I'm going to leave that there and for those who have seen it will understand that I am not wishing cancer on anyone, just the ability to understand what it is like to be a patient at the mercy of doctors. In particularly Doctors who have all the answers. I am glad that doctors have all the answers when we are discussing an extremely rare cancer. About 800 new patients each year and of those an extremely few amount have a primary tumor in the lung. I guess there have been so many few cases to go off of so maybe we just make it up as we go along and we tell the cancer that it may not be nauseas until we figure out if it can cause nausea or not. Good thing cancer listens to the experts becuase it doesn't listen to the patients who are hosting it and if it didn't listen to the Doctors cancer maybe considered as dangerous or life threatening.
While on this note. Let's discuss pain too. Why not just lay it all out there on the table and maybe another person with pain or nauseas may run across this and atleast say hey, my doctor is an expert at neausea and non-existent pain too!
While staying in the hospital (aug 9th - 18th 2007) I had went into the hospital with excrciating chest pain that went down into the mid stomach area. It also went up into my chest, around the heart. They couldn't find any reason for this and thought it could have been due to the severe reflux disease (in the chest) and in the stomach due to the blood backing up into my stomach thought caused by the numerous amounts of cysts that I have. I wasn't hurting constantly, although in th ebeginning I was hurting alot more consistently and frequently. We upped the nexxium and over time it seemed to get less and less. The pain in the stomach definitely comes and goes in cycles, probably around the cycles of my menstruating. I have frequently had a pain that would come on quickly and leave just as quickly in my head left front side and up over the top and sometimes beginning in the right lower back side of my head (where the head meets the neck.) I have had that pain for approx. 1 year now on and off.
The Biopsy
The biopsy went well and they checked afterward to make sure there were no problems after the procedure. Within a couple of hours after the biopsy I had pain in my lower left lung. I did not know it was the lower left lung. I just knew where I felt th epain and the Doctors in the hospital thought it could be from where they went straight through a muscle around my shoulder blad and down into the lung with the needle. They told me that they had seen that before and that it does go away over time that the injured muscle contracts tightly thus causing the pain. I don't know as I am not a doctor but it sounded reasonable to me! In the hospital they were giving me a low dose of morphine by putting it in my IV. When it was time to go home, I still had the pain...it was consisently worsening in the evenings and so that is th eonly time I was needing any pain medication for it.
Since I would be going home my husband asked what we would do about the pain that would come on...the hospitalist prescribed mepregan for this. After getting home the pain would come on in the evenings just the same and I was taking the mepregan. Sometimes I would have pain earlier now than the usual evenings so I would take mepregan twice a day. This wasn't really helping the pain. The mepregan didn't help the chest pain or the head pain at all. So I stopped taking it.
Now it was time to start throwing up profusely! I thought Oh! now here comes the real fun! Doctors have no idea why I am nauseas or throwing up. At this time I possibly had a bone tumor in my head. The one that I had, then didn't, then had, then didn't have it again. It just depended on what test they had just ran and what doctor I was talking to as to whether it existed or not. This was probably the most initial frustrating part of the whole ordeal to date. We have no idea what stage this cancer is in either. I am not even sure if I want to know. I think it means the same thing whether I know it or not. This is strange for me as I am the person who wants to know and have the answers for most things in life. If I don't know I look it up and read about it. It is hard to take it all in though when it is about you and it may not be the best of situations. So anyway, I began throwing up a lot. We were worried about me traveling that way considering it is even less fun to throw up for an entire car ride. So George got in touch with a PA that is a friend of ours and she wanted to see me before we went on our trip, she was planning on setting up the medication for the pain when I needed it as well as taking care of the nausea, this way I could travel to the experts without throwing up the entire flight and they would know more of what to do about these types of things for this type of cancer. She put me on 20 mg Kadian to take in the mornings and 5 mg oxycodone for breakthrough pain, when it came on in the evenings and she explained that I could take that in less amounts too, however much I needed up to a certain amount per day. Nausea, for this she prescribed zofran, 8 mg pills and I could do those the same way. A whole pill if it was really bad or I could break it up into quarters or halves, depending on how much I needed (apparently I can take up to 24 mgs of this a day.) Although I never took over 8 mgs and that was stretched out in quarters to half a pill at a time, which would be 2-4 mgs at a time up to 8 mgs a day is what I have been taking.
The Specialists in Chicago while voicing their concerns are that the oxycontin is probably causing the head pain, which he thinks just may be a headache broughton by the medicine. Even thought the head pain has been there on and off for over a year and I had just began the medicine the week before I was in his office, the same exact pain in the same place just more frequent now and with more intensity. Although it still isn't totally unbearable and it isn't usually extremely intolerable. It just hurts really bad, but usually briefly.While seeing him he changed it to oxycontin 5 mg for breakthrough and 10 mg oxcontin for regularly. Oh my gosh, can we say overkill. That medication actually causes me to have headaches a dull ache that just styas there as well as making me feel groggy. The whole point was low doses for when i really needed it and something that woudl still allow me to function at 100%. I think we have now totally missed the mark. As well as the doctor thinks I shouldn't be needing to take anything becuae I shouldn't be having any pain. I say of course I shouldn't need to take it the problem is that sometimes do need to take it!!
While on this note. Let's discuss pain too. Why not just lay it all out there on the table and maybe another person with pain or nauseas may run across this and atleast say hey, my doctor is an expert at neausea and non-existent pain too!
While staying in the hospital (aug 9th - 18th 2007) I had went into the hospital with excrciating chest pain that went down into the mid stomach area. It also went up into my chest, around the heart. They couldn't find any reason for this and thought it could have been due to the severe reflux disease (in the chest) and in the stomach due to the blood backing up into my stomach thought caused by the numerous amounts of cysts that I have. I wasn't hurting constantly, although in th ebeginning I was hurting alot more consistently and frequently. We upped the nexxium and over time it seemed to get less and less. The pain in the stomach definitely comes and goes in cycles, probably around the cycles of my menstruating. I have frequently had a pain that would come on quickly and leave just as quickly in my head left front side and up over the top and sometimes beginning in the right lower back side of my head (where the head meets the neck.) I have had that pain for approx. 1 year now on and off.
The Biopsy
The biopsy went well and they checked afterward to make sure there were no problems after the procedure. Within a couple of hours after the biopsy I had pain in my lower left lung. I did not know it was the lower left lung. I just knew where I felt th epain and the Doctors in the hospital thought it could be from where they went straight through a muscle around my shoulder blad and down into the lung with the needle. They told me that they had seen that before and that it does go away over time that the injured muscle contracts tightly thus causing the pain. I don't know as I am not a doctor but it sounded reasonable to me! In the hospital they were giving me a low dose of morphine by putting it in my IV. When it was time to go home, I still had the pain...it was consisently worsening in the evenings and so that is th eonly time I was needing any pain medication for it.
Since I would be going home my husband asked what we would do about the pain that would come on...the hospitalist prescribed mepregan for this. After getting home the pain would come on in the evenings just the same and I was taking the mepregan. Sometimes I would have pain earlier now than the usual evenings so I would take mepregan twice a day. This wasn't really helping the pain. The mepregan didn't help the chest pain or the head pain at all. So I stopped taking it.
Now it was time to start throwing up profusely! I thought Oh! now here comes the real fun! Doctors have no idea why I am nauseas or throwing up. At this time I possibly had a bone tumor in my head. The one that I had, then didn't, then had, then didn't have it again. It just depended on what test they had just ran and what doctor I was talking to as to whether it existed or not. This was probably the most initial frustrating part of the whole ordeal to date. We have no idea what stage this cancer is in either. I am not even sure if I want to know. I think it means the same thing whether I know it or not. This is strange for me as I am the person who wants to know and have the answers for most things in life. If I don't know I look it up and read about it. It is hard to take it all in though when it is about you and it may not be the best of situations. So anyway, I began throwing up a lot. We were worried about me traveling that way considering it is even less fun to throw up for an entire car ride. So George got in touch with a PA that is a friend of ours and she wanted to see me before we went on our trip, she was planning on setting up the medication for the pain when I needed it as well as taking care of the nausea, this way I could travel to the experts without throwing up the entire flight and they would know more of what to do about these types of things for this type of cancer. She put me on 20 mg Kadian to take in the mornings and 5 mg oxycodone for breakthrough pain, when it came on in the evenings and she explained that I could take that in less amounts too, however much I needed up to a certain amount per day. Nausea, for this she prescribed zofran, 8 mg pills and I could do those the same way. A whole pill if it was really bad or I could break it up into quarters or halves, depending on how much I needed (apparently I can take up to 24 mgs of this a day.) Although I never took over 8 mgs and that was stretched out in quarters to half a pill at a time, which would be 2-4 mgs at a time up to 8 mgs a day is what I have been taking.
The Specialists in Chicago while voicing their concerns are that the oxycontin is probably causing the head pain, which he thinks just may be a headache broughton by the medicine. Even thought the head pain has been there on and off for over a year and I had just began the medicine the week before I was in his office, the same exact pain in the same place just more frequent now and with more intensity. Although it still isn't totally unbearable and it isn't usually extremely intolerable. It just hurts really bad, but usually briefly.While seeing him he changed it to oxycontin 5 mg for breakthrough and 10 mg oxcontin for regularly. Oh my gosh, can we say overkill. That medication actually causes me to have headaches a dull ache that just styas there as well as making me feel groggy. The whole point was low doses for when i really needed it and something that woudl still allow me to function at 100%. I think we have now totally missed the mark. As well as the doctor thinks I shouldn't be needing to take anything becuae I shouldn't be having any pain. I say of course I shouldn't need to take it the problem is that sometimes do need to take it!!
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