jtomishin
01-28-2008, 03:04 PM
I would like to know how long a catheter will have to be worn after the vaginal hysterectomy w/cystocele repair that I will be going through next month.. How painful will this surgery be for me?? I absolutely freak out with catheters, and knowing that I will probably be wearing one home really bothers me..my Dr. tells me that it could take longer than 4 weeks also!! could anyone please tell me about their experience with this?? did you experience painful spasms with this bladder surgery?? I would appreciate anyone's output on this please...
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mom2eck
02-04-2008, 04:32 AM
I had cystocele operation in October. I have had many complications, however to answer your questions about the cathedar. I had a subpubic. Since I was urinating fine before I left the hospital I didn't have to go home with it. I wish I had. I ended up in ER, getting a new catheder the night I went home. I had it for 4 days and was thankful for it. It goes by fast. I had NO pain associated with the surgery and had a hysterectomy at the same time. I urge you to check into ALL complications of this surgery. I am 16 weeks out and headed back for a 3rd surgery since the vaginal incision will not heal.
jtomishin
02-05-2008, 10:23 AM
Thank you so much for your answer...I have another meeting with the Dr. after some urodynamic tests they will be doing a week before the surgery, and you can best believe I will be asking him about these complications..I find it remarkable you didn't have much pain associated with this...don't like to hear about the complications you are having though...hope this all straightens out for you...J.T.
mom2eck
02-08-2008, 02:11 AM
Good Luck and keep me posted as to how it goes. If your doctor does a super pubic cath., go with it - it makes life so easy after surgery. You can still pee on your own and if you "can't" then you open the cath. and drain it yourself. Once you can empty your bladder on your own the cath. can be removed. It goes into your bladder just above your "hairline". I have a tiny scare that I'm sure it will fade over time. My complications are lingering on with a doctor that has decided to do nothing about my incision that won't heal. You can see my other posts that contain the details.
-Tammie
-Tammie
jtomishin
02-21-2008, 05:46 PM
I also forgot to mention that I also have the anterior vaginal wall prolapse along with the cystocele and vaginal hysterectomy...will most likely have the ovaries out also, since I am at an age where I really don't need it anymore...thinking it might help in case anything should develop down the road with them...
what kind of prep did you have to go through the day before surgery, such as drinking stuff for bowel cleanout...was just wondering...did they ask you to take a betadine douche also??
what kind of prep did you have to go through the day before surgery, such as drinking stuff for bowel cleanout...was just wondering...did they ask you to take a betadine douche also??
jules3
02-21-2008, 06:47 PM
Whew, wait a second? somebody please answer, does everyone need a catheter after a hysterectomy? or is that only with bladder surgery?
Momof2sons
02-22-2008, 11:19 AM
jtomishin,
I had a hyst/bladder sling 10 years ago. At that time there was NO prep for the surgery, not sure what it is now, or what YOUR doctors prefers.
I also had the suprapubic catheter post op, and I agree, it was a HUGE help!
Unfortunatly my bladder NEVER regained function( BUT IS EXTREAMLY RARE FOR THIS TO HAPPEN!) Are they doing this surgery with assistence of a Laproscope? If not, I would RECOMEND IT. I had a "TVH" (Transvaginal hysterectomy) with the bladder sling. It was done vaginaly, NO Laproscopy was used. This means its a BLIND surgery! I'm by NO MEANS trying to scare YOU, BUT I believe in being FULLY informed when it comes to OUR bodies, and what is being done to them. The fact its a blind surgery, is something the Doctors seem to leave out. At least with a "lap assist" surgery, they can SEE what is being done, its not done by "feel" alone. So less chances for complications.
I recieved "nerve" damage during the hysterectomy part of the surgery, as I said its RARE to happen, but the fact is it CAN. I have been "self cathing" for 10 years now. At this point it is second nature to me, But at the time, I was 33 years old, and it was pretty dawnting. I would NEVER have another "blind" surgery again, and would demand a laproscope to be used.
I'm happy to hear you are going to have the chance to ASK your questions BEFORE you have this done. You have the right to request a lap assist, "IF" that is what you choose you want.
Please remember, I'm NOT trying to scare you, and I hope I didnt, but "knowledge is power" in my opinion. And also remember, what happen to me is QUITE RARE, but truely believe in being FULLY informed.
I wish you the best! And a speedy recovery, which I'm SURE you will.
Take care, and GOd bless,
Annette
I had a hyst/bladder sling 10 years ago. At that time there was NO prep for the surgery, not sure what it is now, or what YOUR doctors prefers.
I also had the suprapubic catheter post op, and I agree, it was a HUGE help!
Unfortunatly my bladder NEVER regained function( BUT IS EXTREAMLY RARE FOR THIS TO HAPPEN!) Are they doing this surgery with assistence of a Laproscope? If not, I would RECOMEND IT. I had a "TVH" (Transvaginal hysterectomy) with the bladder sling. It was done vaginaly, NO Laproscopy was used. This means its a BLIND surgery! I'm by NO MEANS trying to scare YOU, BUT I believe in being FULLY informed when it comes to OUR bodies, and what is being done to them. The fact its a blind surgery, is something the Doctors seem to leave out. At least with a "lap assist" surgery, they can SEE what is being done, its not done by "feel" alone. So less chances for complications.
I recieved "nerve" damage during the hysterectomy part of the surgery, as I said its RARE to happen, but the fact is it CAN. I have been "self cathing" for 10 years now. At this point it is second nature to me, But at the time, I was 33 years old, and it was pretty dawnting. I would NEVER have another "blind" surgery again, and would demand a laproscope to be used.
I'm happy to hear you are going to have the chance to ASK your questions BEFORE you have this done. You have the right to request a lap assist, "IF" that is what you choose you want.
Please remember, I'm NOT trying to scare you, and I hope I didnt, but "knowledge is power" in my opinion. And also remember, what happen to me is QUITE RARE, but truely believe in being FULLY informed.
I wish you the best! And a speedy recovery, which I'm SURE you will.
Take care, and GOd bless,
Annette
jtomishin
02-22-2008, 11:41 AM
Annette, thank you so much for your input...I have printed your comment and am putting it in a folder along with other questions that I have for the Dr.
My surgery is scheduled for March 10th, and am getting more nervous as the time approaches...
I am truly sorry to hear of the complications you have suffered from your surgery ten years ago..my heart goes out to you... and thank you for saying it is my "right" to request an assisted laprascopic along with the TVH... I will be bringing all of this up with my Dr. in a week and half from now...this certainly added insight as to what I can ask for and didn't realize...
You will be in my thoughts and prayers...thank you...J.T.
My surgery is scheduled for March 10th, and am getting more nervous as the time approaches...
I am truly sorry to hear of the complications you have suffered from your surgery ten years ago..my heart goes out to you... and thank you for saying it is my "right" to request an assisted laprascopic along with the TVH... I will be bringing all of this up with my Dr. in a week and half from now...this certainly added insight as to what I can ask for and didn't realize...
You will be in my thoughts and prayers...thank you...J.T.
Momof2sons
02-22-2008, 01:42 PM
jtomishin,
Your VERY welcome! I just feel we all need to know the facts. I have found over the years (The hard way) that WE are our OWN BEST ADVOCATES, and to be that, we need to be informed.
I can honestly say, that had I known ALL the risks back then, I still would have had it done, because I would have never thought it would have happened to ME. THat being said, It wouldnt have come to such a shock to me, when it DID happen, had I known it was a possible risk, if that makes since. As I said, at this point being 10 years later, it is simply second nature to me, and just another part of my daily rutien, but intionaly was pretty tramatic.
I'm SURE all will go wonderful for you! Please let us know how your DOctor visit(pre-op) goes.
Take care, and GOd bless,
Annette
Your VERY welcome! I just feel we all need to know the facts. I have found over the years (The hard way) that WE are our OWN BEST ADVOCATES, and to be that, we need to be informed.
I can honestly say, that had I known ALL the risks back then, I still would have had it done, because I would have never thought it would have happened to ME. THat being said, It wouldnt have come to such a shock to me, when it DID happen, had I known it was a possible risk, if that makes since. As I said, at this point being 10 years later, it is simply second nature to me, and just another part of my daily rutien, but intionaly was pretty tramatic.
I'm SURE all will go wonderful for you! Please let us know how your DOctor visit(pre-op) goes.
Take care, and GOd bless,
Annette
jtomishin
02-27-2008, 10:42 AM
Annette, I was also wondering if that suprapubic cath you wore after the surgery was with or without a bag...I definitely do not want a bag to go home with at all..he told me it may take longer than a few weeks, that is wearing the catheter...of course, I never thought of asking what kind, but will when I see him next week....quite a few years ago I had such a bad bladder infection, I had to wear a cath for awhile..it did not have a bag, it had a cap to it, and all I had to do was turn the cap and drain into the toilet and put cap back on, and this was attached to the side of my thigh with some tape...I even went to work with it...now, of course, it was a type of foley cath. not like what you had, but I was wondering if the Dr. would allow that for me....don't know if the suprabpuic cath comes like that or not, and of course, it depends on what type he wants me to wear...do not like the bag though....my ex husband had to wear one after his cancer prostate surgery, and when he was over to see the kids, I could smell urine...that's unacceptable to me, do not want anything leaking, etc... thanks Annette...
Momof2sons
02-27-2008, 10:58 AM
jtomishin,
No MY suprapubic cath did NOT have a bag. Mine had a valve on the end of it which I opened to drain simular to what you described. I had what I refered to as a "holster" that was taped to my hip, and had a velcro strap type thing that I hooked the valve end to.
You CAN request the type of catheter you want also. Just let him know you dont want a bag to go home with. I requested the suprapubic, rather than a foley, but as I said Im sure he would have no problem setting you up with what you want.
Did you get all your questions answered?
Take care and GOd bless,
Annette
No MY suprapubic cath did NOT have a bag. Mine had a valve on the end of it which I opened to drain simular to what you described. I had what I refered to as a "holster" that was taped to my hip, and had a velcro strap type thing that I hooked the valve end to.
You CAN request the type of catheter you want also. Just let him know you dont want a bag to go home with. I requested the suprapubic, rather than a foley, but as I said Im sure he would have no problem setting you up with what you want.
Did you get all your questions answered?
Take care and GOd bless,
Annette
jtomishin
02-27-2008, 11:18 AM
Annette...many thanks again....I will show him your reply...thank you for answering so quickly...I see him on the 7th (next Friday) have to go through some urodynamic testing that I am not thrilled with, but, oh well.... and my surgery is the 10th...He is on vacation all of Feb. and then starts his surgery for the year beginning March, so I guess I am one of the first ones for the year...will be asking him a lot of questions next Friday, after testing....thanks again Annette...will keep you posted....
Momof2sons
02-27-2008, 12:49 PM
jtomishin,
I can understand the NOT looking foward to the urodynamics...Oh What WE women go through!..
Do you know what he is going to do for the cystocele? I had a bladder sling procedure, there are other ways they also do the cystocele repair one is also called the "burch" (sp?) procedure, but I think that one has to be done abdomonaly? There are other types too I believe. I know these days they use different material for the slings.
With me they used my own "fashia"(sp?) they took it from an area below my belly button in the pubic area and created a "sling" out of that. I dont believe they do it that way anymore? Thats another question you could ask also is what type of cyctocele repair he plans on. It sounds like he is a good Doctor and covering all the basis PRIOR to doing the surgery...ie....doing urodynamics BEFORE! When I had mine, they DID'NT do any testing other than a exam and that was it. Confirmed prolaps of Uterus and bladder and did surgery. SO you do sound like your in good hands. And thats comforting!
I sure wish there was a site like this when I had mine done! It would have made things easier to cope with.
I'll be looking foward to your report from the Doctor!
Take care and GOd bless,
Annette
I can understand the NOT looking foward to the urodynamics...Oh What WE women go through!..
Do you know what he is going to do for the cystocele? I had a bladder sling procedure, there are other ways they also do the cystocele repair one is also called the "burch" (sp?) procedure, but I think that one has to be done abdomonaly? There are other types too I believe. I know these days they use different material for the slings.
With me they used my own "fashia"(sp?) they took it from an area below my belly button in the pubic area and created a "sling" out of that. I dont believe they do it that way anymore? Thats another question you could ask also is what type of cyctocele repair he plans on. It sounds like he is a good Doctor and covering all the basis PRIOR to doing the surgery...ie....doing urodynamics BEFORE! When I had mine, they DID'NT do any testing other than a exam and that was it. Confirmed prolaps of Uterus and bladder and did surgery. SO you do sound like your in good hands. And thats comforting!
I sure wish there was a site like this when I had mine done! It would have made things easier to cope with.
I'll be looking foward to your report from the Doctor!
Take care and GOd bless,
Annette
jtomishin
02-27-2008, 02:12 PM
Annette, I can't thank you enough for all that I am learning thru you!!
I didn't even know they could create a sling the way they did from below your navel!! how they do it now, I do not have a clue, as this is all new to me...I heard there is a risk of the body rejecting some of these man made materials???
He will tell me everything next week, as I do not want to be hit with all kinds of things the morning of the surgery...I want to know exactly what is going to be done on me and how ...when he was first examining me he felt a "thickening", it could mean a lot of things, and it may also mean I won't have a TVH...he may have to go through the abdomen, but said he wouldn't know till after the ultrasound...trouble is, I see him immediately after the urodynamic testing...the ultrasound is after I see him....well, I think I may want him to call me at home and let me know, as I really don't want to be surprised the morning I walk in for surgery as I said before, it will be that following Monday...
Thank you so much for giving me all this information...I have till next Thursday to go back and forth on the computer, should I have questions (If you don't mind) but after that, I won't be able to let you know until I am back at work from surgery, as I do not have a computer at home...
Thank you ever so much again.....J.T.
I didn't even know they could create a sling the way they did from below your navel!! how they do it now, I do not have a clue, as this is all new to me...I heard there is a risk of the body rejecting some of these man made materials???
He will tell me everything next week, as I do not want to be hit with all kinds of things the morning of the surgery...I want to know exactly what is going to be done on me and how ...when he was first examining me he felt a "thickening", it could mean a lot of things, and it may also mean I won't have a TVH...he may have to go through the abdomen, but said he wouldn't know till after the ultrasound...trouble is, I see him immediately after the urodynamic testing...the ultrasound is after I see him....well, I think I may want him to call me at home and let me know, as I really don't want to be surprised the morning I walk in for surgery as I said before, it will be that following Monday...
Thank you so much for giving me all this information...I have till next Thursday to go back and forth on the computer, should I have questions (If you don't mind) but after that, I won't be able to let you know until I am back at work from surgery, as I do not have a computer at home...
Thank you ever so much again.....J.T.
Momof2sons
02-27-2008, 03:43 PM
jtomishin,
Yes, I have ALSO read how some women have rejection from some of the materials they now use! Major issues with "errosion," I'm not sure WHY they stopped using the persons own fashia, but would think doing so would decrease chances of complications. The area they took mine from was in the pubic area, like a bit below where your hair line starts, if that makes since.
Fashia is the "silver" colored covering over your muscles, so they DO NOT cut the muscle at all when harvesting it. Might be something you could ask about as well.Or at least ask why they no longer use it?
Hmmm...I'm interested in what he says the "thickening" is. Wonder if its the bladder neck itself?
I'm sure if you asked him( when you see him after urodynamic study) to call you after the ultra sound he would.
I dont blame you for not wanting ANY suprises, I've had MANY and would'nt want them again!
Thats why I try to prepare well with my own research prior. For example back in June, I had to have a significant surgery on my head, they made a 3" hole in my skull above my ear, to repair a hole I had within my inner ear, causing Major balance issues, Well I researched to the point I found actual video's online of the procedure, and when reading about any complications, found that "rarely" you can loose the hearing in that ear. Well that was something the surgeon NEVER told me about, and guess what...IT HAPPENED! When I told him he was SHOCKED!..Never had happened to one of HIS patients!..Well Being an honest person that I am(well ..... AND because the LOOK of FEAR he had on his face! As though I would "SUE HIM" LOOK!!) I said well I DID read that PRIOR to the surgery, and I felt it was a small price to pay to have my balance back. Made him feel better! I'm still having issues with total deafness on one side, Very difficult to tell what direction a noise is coming from, hard to hear with ANY KIND of back ground noise, BUT..I KNEW PRIOR, that that could happen. Not that I wanted it to. But my point is sometimes bad things can happen, and being for-warned of any possibilities, makes it somehow more tollerable, IF it does.
Oh MAN!!..You mean I will have to WAIT until you get back to WORK!!??..LOL
I'll be chomping at the bit!..lol
Feel free to ask away. I may not have all the answers but willing to help you with finding them.
Take care and God bless,
Annette
Yes, I have ALSO read how some women have rejection from some of the materials they now use! Major issues with "errosion," I'm not sure WHY they stopped using the persons own fashia, but would think doing so would decrease chances of complications. The area they took mine from was in the pubic area, like a bit below where your hair line starts, if that makes since.
Fashia is the "silver" colored covering over your muscles, so they DO NOT cut the muscle at all when harvesting it. Might be something you could ask about as well.Or at least ask why they no longer use it?
Hmmm...I'm interested in what he says the "thickening" is. Wonder if its the bladder neck itself?
I'm sure if you asked him( when you see him after urodynamic study) to call you after the ultra sound he would.
I dont blame you for not wanting ANY suprises, I've had MANY and would'nt want them again!
Thats why I try to prepare well with my own research prior. For example back in June, I had to have a significant surgery on my head, they made a 3" hole in my skull above my ear, to repair a hole I had within my inner ear, causing Major balance issues, Well I researched to the point I found actual video's online of the procedure, and when reading about any complications, found that "rarely" you can loose the hearing in that ear. Well that was something the surgeon NEVER told me about, and guess what...IT HAPPENED! When I told him he was SHOCKED!..Never had happened to one of HIS patients!..Well Being an honest person that I am(well ..... AND because the LOOK of FEAR he had on his face! As though I would "SUE HIM" LOOK!!) I said well I DID read that PRIOR to the surgery, and I felt it was a small price to pay to have my balance back. Made him feel better! I'm still having issues with total deafness on one side, Very difficult to tell what direction a noise is coming from, hard to hear with ANY KIND of back ground noise, BUT..I KNEW PRIOR, that that could happen. Not that I wanted it to. But my point is sometimes bad things can happen, and being for-warned of any possibilities, makes it somehow more tollerable, IF it does.
Oh MAN!!..You mean I will have to WAIT until you get back to WORK!!??..LOL
I'll be chomping at the bit!..lol
Feel free to ask away. I may not have all the answers but willing to help you with finding them.
Take care and God bless,
Annette
jtomishin
02-27-2008, 04:34 PM
Annette, wow! it sounds like you have been through quite an ordeal !!
Sounds so familiar to me what you went through, very similar to my ex-mother-in-law, she also lost hearing on the one side...of course, it's been a couple of years since she passed away, and the surgery was even longer than that, but she went through so much with that ear surgery also back then....
You've given me so many things to ask the Dr. about, and I am soooo grateful for all of this information, just keep feeling bad that you have been through so much already....definitely am bringing up about what will be used for the cystocele repair...
The thickening he felt he thought, may be due to some diverticulitis I may have?? doesn't have to present itself as a big problem all of the time to have this...or, it could be a tumor, which is why he ordered the vaginal ultrasound, to rule all this out, as he would have to change options the way he wanted to do the surgery , meaning he may have to go through the abdomen...hope not...we'll see...
yeah, sorry about the computer...I do all of this at work (ha ha...) been meaning to buy one just haven't gotten aound to it...will one day soon I hope..
Wishing you a nice day, and thanking you again for all the info...you take care... J.T.
Sounds so familiar to me what you went through, very similar to my ex-mother-in-law, she also lost hearing on the one side...of course, it's been a couple of years since she passed away, and the surgery was even longer than that, but she went through so much with that ear surgery also back then....
You've given me so many things to ask the Dr. about, and I am soooo grateful for all of this information, just keep feeling bad that you have been through so much already....definitely am bringing up about what will be used for the cystocele repair...
The thickening he felt he thought, may be due to some diverticulitis I may have?? doesn't have to present itself as a big problem all of the time to have this...or, it could be a tumor, which is why he ordered the vaginal ultrasound, to rule all this out, as he would have to change options the way he wanted to do the surgery , meaning he may have to go through the abdomen...hope not...we'll see...
yeah, sorry about the computer...I do all of this at work (ha ha...) been meaning to buy one just haven't gotten aound to it...will one day soon I hope..
Wishing you a nice day, and thanking you again for all the info...you take care... J.T.
Momof2sons
02-28-2008, 10:45 AM
J.T.,
Well, the way I deal with all the issues I have been through is helping someone possibly AVOID the same situation. It does make me feel better to help where I can, so if you must know, the truth is, by helping others, ..in turn helps ME. So it all "washes" in my book...
I will certiantly say a prayer for you reguarding the "thickening" that was found, and that its an EASY fix!
Have you asked the Doc about recovery time? How long does he expect with the requirments of your job...More importantly how long I HAVE TO WAIT...before I find out how you made out!..ha ha
Take care and God bless,
Annette
P.S. Reguarding your x mother-in-law....Do you know if her Skull EVER fused back together? Mine still hasnt, and its been since June, still cant lay down to sleep. And have NEW vision issues also. She is the first person I have ever heard had had this surgery.
Well, the way I deal with all the issues I have been through is helping someone possibly AVOID the same situation. It does make me feel better to help where I can, so if you must know, the truth is, by helping others, ..in turn helps ME. So it all "washes" in my book...
I will certiantly say a prayer for you reguarding the "thickening" that was found, and that its an EASY fix!
Have you asked the Doc about recovery time? How long does he expect with the requirments of your job...More importantly how long I HAVE TO WAIT...before I find out how you made out!..ha ha
Take care and God bless,
Annette
P.S. Reguarding your x mother-in-law....Do you know if her Skull EVER fused back together? Mine still hasnt, and its been since June, still cant lay down to sleep. And have NEW vision issues also. She is the first person I have ever heard had had this surgery.
jtomishin
02-28-2008, 05:04 PM
Annette, your plate is certainly full! ... but I guess that's what makes you such a beautiful person, helping others the way you do...your boys are so lucky to have a mom like you!! you sound awesome!!
You have a good evening...take care.....J.T.
You have a good evening...take care.....J.T.
Momof2sons
03-05-2008, 11:30 AM
J.T.,
How you holding up?
Just checking up on you. I wish you were seeing the Doctor before Friday to give me an update before the surgery. Just know I will definetly say a prayer for you and be thinking about you. I wish you the best, and will be waiting for your return! I'm sure all will go well, sounds like the Doctor is on the ball, and doing all the testing you need before going forward.
Take care, and GOd bless,
Annette
How you holding up?
Just checking up on you. I wish you were seeing the Doctor before Friday to give me an update before the surgery. Just know I will definetly say a prayer for you and be thinking about you. I wish you the best, and will be waiting for your return! I'm sure all will go well, sounds like the Doctor is on the ball, and doing all the testing you need before going forward.
Take care, and GOd bless,
Annette
jtomishin
03-06-2008, 10:30 AM
Annette, well, things have changed a bit...they changed my surgery for the following Monday, the 17th, instead of the 10th...I was supposed to go in for most of my testing tomorrow, but they cancelled some of it, as the Dr. will not be in on the 7th as planned ...anyway, I insisted on having the ultrasound tomorrow as planned...I know they won't tell me much, as they want my Dr. to talk with me, (he was supposed to be there to see the results the day of the ultrasound) but at least I should have the results by Tuesday....they were trying to make me wait until next week for all of these tests. (his scheduling nurse called me and this "thickening" he referred to me the fist time, she refers to as a "mass" in my abdomen, needless to say, I was pretty upset.....if something comes up that is not good, say in the colon (if the ultrasound can read that) then I am putting off the surgery and having this taken care of first, as that would be the most important issue...I won't know until the results are in next week though....anyway, I will also do all of that preadmission stuff tomorrow, such as the paperwork, ekg, bloodwork, chest x-ray etc....next Friday, I go for the urodynamic testing and my consultation with him if all goes well...thanks so much for your concern, and for your prayers.......J.T.
Momof2sons
03-06-2008, 12:55 PM
J.T.,
You know, I HATE IT when Doctors don't give you the WHOLE story! This is WHY I research so much, and get copies of my actual records so I KNOW EXACTLY what is going on with ME! I told you that the surgeon who did the surgery on my head had not given me the ENTIRE story. Well he was what I would call a "Sugar Coater" not giving ALL the information! He was the Doctor who had ordered my CHEST CT scan cause "something" showed up in my Pre-op x-ray. Well I went and had the CT done, and when I returned to him all he told me was " you have a little spot on you lung", and "they recomend follow-up CT in three months". Well I TRUSTED him, and didnt get the copy of the CT scan. Well, the more I thought about it, I called over there (300 miles away from home) and asked them to SEND me a copy of the report. Well after SEVERAL calls, weeks went by, and FINALLY AFTER I had surgery, I got a copy of the CT. And found I had 2 nodules on both lungs, emphysema, scattered larger bullae(blisters) on my lungs! I was ANGRY to say the least, because I WOULDNT have had surgery on my head, until THAT was addressed! So that was a lesson learned. That NOT all Doctors will disclose EVERYTHING!
Do you "Want" to know what the report said? If so, I highly recomend you go and get a copy of the actual report, that way you CAN be your OWN ADVOCATE! You cant be an advocate unless you have ALL the facts.
I'm So sorry your going through this!
I want to add something to maybe give you some sort of peace of mind...
I had a renal ultrasound last year for kidney pain I had been having. In that ultrasound there was a "3cm complex cyst" found on my right ovary. My primary care freaked, and said I would have to have it removed. I got an appt with the Top GYN/ONC at Mayo clinic for a second opinion. He did a "internal ultra sound" and found that it was a "funcitional cyst" being that it was several harmless cysts that come and go with ovulation but had "appeared" like a complex cyst on the renal ultra sound. Also even with the inturnal ultrasound they could NOT find my Left ovary, and he thought that perhaps they had removed it when I had my hysterectomy. I told him I KNOW they DIDNT remove it, I had my records. Well long story short, he recomended a repeat ultrasound in 6 months just to be sure. And low and behold, the cysts on my right ovary were just about gone, BUT my previously "missing" LEFT ovary, had shown back up, with 2 "functional cysts" on that one as well. Inturnal ultrasounds are more accurate in that case.
"TRY" not to read TOO much into this, until you have ALL the facts. I know its hard, but theres a saying I like to refer to..."Just because you Hear Hoof beats, dosent necessarly mean its a "Horse", It just MAY be a "ZEBRA"! I have learned that I appear to be a ZEBRA with SPOTS on MANY occations!
Take care my friend, try not to worry, and please if you need to vent, by ALL MEANS Im here! Prayers continuing!
God bless,
Annette
You know, I HATE IT when Doctors don't give you the WHOLE story! This is WHY I research so much, and get copies of my actual records so I KNOW EXACTLY what is going on with ME! I told you that the surgeon who did the surgery on my head had not given me the ENTIRE story. Well he was what I would call a "Sugar Coater" not giving ALL the information! He was the Doctor who had ordered my CHEST CT scan cause "something" showed up in my Pre-op x-ray. Well I went and had the CT done, and when I returned to him all he told me was " you have a little spot on you lung", and "they recomend follow-up CT in three months". Well I TRUSTED him, and didnt get the copy of the CT scan. Well, the more I thought about it, I called over there (300 miles away from home) and asked them to SEND me a copy of the report. Well after SEVERAL calls, weeks went by, and FINALLY AFTER I had surgery, I got a copy of the CT. And found I had 2 nodules on both lungs, emphysema, scattered larger bullae(blisters) on my lungs! I was ANGRY to say the least, because I WOULDNT have had surgery on my head, until THAT was addressed! So that was a lesson learned. That NOT all Doctors will disclose EVERYTHING!
Do you "Want" to know what the report said? If so, I highly recomend you go and get a copy of the actual report, that way you CAN be your OWN ADVOCATE! You cant be an advocate unless you have ALL the facts.
I'm So sorry your going through this!
I want to add something to maybe give you some sort of peace of mind...
I had a renal ultrasound last year for kidney pain I had been having. In that ultrasound there was a "3cm complex cyst" found on my right ovary. My primary care freaked, and said I would have to have it removed. I got an appt with the Top GYN/ONC at Mayo clinic for a second opinion. He did a "internal ultra sound" and found that it was a "funcitional cyst" being that it was several harmless cysts that come and go with ovulation but had "appeared" like a complex cyst on the renal ultra sound. Also even with the inturnal ultrasound they could NOT find my Left ovary, and he thought that perhaps they had removed it when I had my hysterectomy. I told him I KNOW they DIDNT remove it, I had my records. Well long story short, he recomended a repeat ultrasound in 6 months just to be sure. And low and behold, the cysts on my right ovary were just about gone, BUT my previously "missing" LEFT ovary, had shown back up, with 2 "functional cysts" on that one as well. Inturnal ultrasounds are more accurate in that case.
"TRY" not to read TOO much into this, until you have ALL the facts. I know its hard, but theres a saying I like to refer to..."Just because you Hear Hoof beats, dosent necessarly mean its a "Horse", It just MAY be a "ZEBRA"! I have learned that I appear to be a ZEBRA with SPOTS on MANY occations!
Take care my friend, try not to worry, and please if you need to vent, by ALL MEANS Im here! Prayers continuing!
God bless,
Annette
jtomishin
03-06-2008, 02:53 PM
Annette, thank you for replying so quickly...yeah, this hasn't been a "fun" couple of days for me.....and thank you for telling me that I can obtain my Dr.'s report on all of this ... I never would of thought of it myself...
I am going in there tomorrow as I said, for the internal ultrasound and I will definitely request it ...
whew! I can't believe what you have been through already!! wow!!...thank you though, for your knowledge in all of this...it does help me, it really does...
I guess what I don't understand, is back in January, when he first felt this "thickening" and what must be down on the report as a "mass", why wouldn't he have urged me to have an ultrasound immediatley?? wouldn't that have made sense?? wish I would of thought of that question when I spoke with him the other day, but of course I didn't think of it until that night...
I did ask him the other day when the scheduling nurse called me at work to let me know about the cancelling of appts. and surgery for different days, etc..(I said I needed to talk to the Dr. regarding this)
why it's being called a "mass" now?? he said well, he likes to think of it as more of a "swelling"...most of the times it isn't anything, he sees this alot, but then again there could be a malignancy...oh swell, that made me feel sooo much better!!!...anyway, I called this morning to the office and spoke with the nurse again, and asked when I could expect the Dr. to look over this ultrasound, and she said by Tuesday of next week...so I will call and ask to speak with him before I go through any more appointments and tests...
I feels as I kind of found a "friend" in you...thank you so much for your support...appreciate all your input and prayers!!
I will not be here tomorrow, but will be here all next week, except for Friday, on......God Bless....J.T.
I am going in there tomorrow as I said, for the internal ultrasound and I will definitely request it ...
whew! I can't believe what you have been through already!! wow!!...thank you though, for your knowledge in all of this...it does help me, it really does...
I guess what I don't understand, is back in January, when he first felt this "thickening" and what must be down on the report as a "mass", why wouldn't he have urged me to have an ultrasound immediatley?? wouldn't that have made sense?? wish I would of thought of that question when I spoke with him the other day, but of course I didn't think of it until that night...
I did ask him the other day when the scheduling nurse called me at work to let me know about the cancelling of appts. and surgery for different days, etc..(I said I needed to talk to the Dr. regarding this)
why it's being called a "mass" now?? he said well, he likes to think of it as more of a "swelling"...most of the times it isn't anything, he sees this alot, but then again there could be a malignancy...oh swell, that made me feel sooo much better!!!...anyway, I called this morning to the office and spoke with the nurse again, and asked when I could expect the Dr. to look over this ultrasound, and she said by Tuesday of next week...so I will call and ask to speak with him before I go through any more appointments and tests...
I feels as I kind of found a "friend" in you...thank you so much for your support...appreciate all your input and prayers!!
I will not be here tomorrow, but will be here all next week, except for Friday, on......God Bless....J.T.
Momof2sons
03-06-2008, 04:07 PM
J.T.,
Yes I would have thought he would have urged you to have an inturnal ultrasound at that point. What kind of Doctor is he, cant remember if you had told me. Uro/GYN, GYN, or URO?
I hope you get a copy of your record tomorrow, and I would make sure when getting a copy, ask specificly for a copy of the actual ultra sound also, that way you will know EXACTLY what the radiologist has seen , Not your Doctors impression OF THE radiology report.
Try to have a good weekend. Will be checking up on you Next week to see how things went.
I'm glad I can help at least listen. Having someone to vent to, can mean the world when facing something you havent before. I have found myself in your situation many times for various medical woo's and have found MANY terrific friends (online friends) that have been my sole support. I talk with people from Scotland, Canada, and MANY states in the United states, so I DO understand what you mean. You sound like a wonderful person as well, and just want you to know your NOT alone!
Take Care, and GOd bless,
Annette
Yes I would have thought he would have urged you to have an inturnal ultrasound at that point. What kind of Doctor is he, cant remember if you had told me. Uro/GYN, GYN, or URO?
I hope you get a copy of your record tomorrow, and I would make sure when getting a copy, ask specificly for a copy of the actual ultra sound also, that way you will know EXACTLY what the radiologist has seen , Not your Doctors impression OF THE radiology report.
Try to have a good weekend. Will be checking up on you Next week to see how things went.
I'm glad I can help at least listen. Having someone to vent to, can mean the world when facing something you havent before. I have found myself in your situation many times for various medical woo's and have found MANY terrific friends (online friends) that have been my sole support. I talk with people from Scotland, Canada, and MANY states in the United states, so I DO understand what you mean. You sound like a wonderful person as well, and just want you to know your NOT alone!
Take Care, and GOd bless,
Annette
jtomishin
03-06-2008, 05:33 PM
Annette, he is a Uro-Gyn...and I will ask for a copy of the actual ultrasound...I wonder if they will give me a hard time about this?? Do you think they can give it to me right away, or is it something that I will have to wait for??
That's awesome you have met so many people all around the world...that's awesome....Thank you again for your concern and support...
You have a good weekend also......J.T.
That's awesome you have met so many people all around the world...that's awesome....Thank you again for your concern and support...
You have a good weekend also......J.T.
Momof2sons
03-06-2008, 05:46 PM
J.T.,
They shouldnt give you a hard time at all after all they are YOUR records, and they should be able to give it to you right then. Although they may feed you a line about once you sign a release, it MAY take 48 hours to obtain.
My primary cares office will give them to me right there, and my neuro's office IF I DONT have an appt where I can actually ask the Doctor for copies(because she will give them to me right there) will have me come in and sign a release, then call me when they are ready.
Either way if he was the Doctor that ordered the ultra sound to begin with they HAVE TO give them to you.
It's become a bit more difficult getting records because of the new "HYYPA laws" you have to get the records from the doctors that ordered the tests or their personal reports. GOne are the days when you could go to your primary care and get any records, and gone are the days that your doctor can send another doctor YOUR records without YOU FIRST signing a release allowing them to do so. Just takes a bit more work.
Wish you the best,
God bless and take care,
Annette
They shouldnt give you a hard time at all after all they are YOUR records, and they should be able to give it to you right then. Although they may feed you a line about once you sign a release, it MAY take 48 hours to obtain.
My primary cares office will give them to me right there, and my neuro's office IF I DONT have an appt where I can actually ask the Doctor for copies(because she will give them to me right there) will have me come in and sign a release, then call me when they are ready.
Either way if he was the Doctor that ordered the ultra sound to begin with they HAVE TO give them to you.
It's become a bit more difficult getting records because of the new "HYYPA laws" you have to get the records from the doctors that ordered the tests or their personal reports. GOne are the days when you could go to your primary care and get any records, and gone are the days that your doctor can send another doctor YOUR records without YOU FIRST signing a release allowing them to do so. Just takes a bit more work.
Wish you the best,
God bless and take care,
Annette
jtomishin
03-06-2008, 06:04 PM
Annette....ok got it!! thanks so much...on my way out....thanks again!
take care .......J.T.
take care .......J.T.
Momof2sons
03-10-2008, 09:55 AM
J.T.,
Were you were able to obtain your Ultrasound report Friday? Hope to hear from you soon.
Take care and God bless,
Annette
Were you were able to obtain your Ultrasound report Friday? Hope to hear from you soon.
Take care and God bless,
Annette
jtomishin
03-10-2008, 10:34 AM
Annette, didn't have a very good weekend....oh, in answer to your question, they said they would mail it to me...
anyway, the radiologist said he was "very concerned" for me... You shouldn't even be able to see my ovaries since I have been post menopausal for quite some time...he couldn't even see my left one at all, but the right one is very large, very large with some smaller tumors or cysts below it...he said this needs to come out NOW...well, I told him Monday I would be going into surgery (17th)..he also asked me if I had had a "biopsy" a short while ago, and I said no, I never had..well, he sees some fluid leaking also, so that can't be good either...my let side is clear as well as the uterus though....meanwhile, I am trying to get in to see an ocologist for a second opinion, that specializes in this field to see me, or review this ultrasound also, so we can see what order things need to be done here...which priority is first here...they didn't say malignant, but I pretty much think so...I should be hearing from the Clinic in about 24 hours, which would make it later today or in the morning...I will be talking to my Dr. also, (who also is from the clinic) as I was told to talk to him on Tuesday, but will try for today I think...that's all I know for now, will let you know more as I find out....J.T.
anyway, the radiologist said he was "very concerned" for me... You shouldn't even be able to see my ovaries since I have been post menopausal for quite some time...he couldn't even see my left one at all, but the right one is very large, very large with some smaller tumors or cysts below it...he said this needs to come out NOW...well, I told him Monday I would be going into surgery (17th)..he also asked me if I had had a "biopsy" a short while ago, and I said no, I never had..well, he sees some fluid leaking also, so that can't be good either...my let side is clear as well as the uterus though....meanwhile, I am trying to get in to see an ocologist for a second opinion, that specializes in this field to see me, or review this ultrasound also, so we can see what order things need to be done here...which priority is first here...they didn't say malignant, but I pretty much think so...I should be hearing from the Clinic in about 24 hours, which would make it later today or in the morning...I will be talking to my Dr. also, (who also is from the clinic) as I was told to talk to him on Tuesday, but will try for today I think...that's all I know for now, will let you know more as I find out....J.T.
Momof2sons
03-10-2008, 04:32 PM
J.T.,
I'm glad to hear your going for a second opinion to a GYN/ONC. I did that same thing with the cysts I had. Begnin cysts on the ovaries can rupture or leak also. I'm not going to say try not to worry, because I know thats near to impossible in your situation. BUT remember one thing I had told you before, "Not everything is what is seems" all the time, My case in point.
I learned a lesson being told I had lung cancer, then finding out it wasnt cancer after all, So "TRY" not to worry, until you have ALL the facts. Wait and see what the Oncologist has to say. You mentioned "clinic" is this a major medical facility your going to?
I will continue prayers for you, just know Im thinking about you, and giving you hugs from afar.
Hope you can get into oncologist soon, please let me know how you make out. I'm here for you if you need to vent.
Take care my friend,
God bless,
Annette
I'm glad to hear your going for a second opinion to a GYN/ONC. I did that same thing with the cysts I had. Begnin cysts on the ovaries can rupture or leak also. I'm not going to say try not to worry, because I know thats near to impossible in your situation. BUT remember one thing I had told you before, "Not everything is what is seems" all the time, My case in point.
I learned a lesson being told I had lung cancer, then finding out it wasnt cancer after all, So "TRY" not to worry, until you have ALL the facts. Wait and see what the Oncologist has to say. You mentioned "clinic" is this a major medical facility your going to?
I will continue prayers for you, just know Im thinking about you, and giving you hugs from afar.
Hope you can get into oncologist soon, please let me know how you make out. I'm here for you if you need to vent.
Take care my friend,
God bless,
Annette
jtomishin
03-11-2008, 09:46 AM
Annette, sorry it has taken me so long to reply...I had to leave early after being here for just an hour or so, just couldn't stay...am okay now....
My Uro-Gyn called me while he was on the road yesterday, and said he looked at the ultrasounds and prompt action needs to be taken...well, I already knew that...anyway, he is trying to get an oncologist to be there with him during surgery, a specialist in this field....so, now, looks like appointments are being changed again, I will know by today, as I already talked to the scheduling nurse this morning, and she should be calling me back sometime today, most likely early....
Yes, the Cleveland Clinic is a major health facility in Cleveland, the hospital I was supposed to go to originally, was Hillcrest, which is an affiliate of Cleveland Clinic.....
Thank you for your kind words of support, it helps me drastically...I'm much better today....will let you know what I hear....Your friend, J.T.
My Uro-Gyn called me while he was on the road yesterday, and said he looked at the ultrasounds and prompt action needs to be taken...well, I already knew that...anyway, he is trying to get an oncologist to be there with him during surgery, a specialist in this field....so, now, looks like appointments are being changed again, I will know by today, as I already talked to the scheduling nurse this morning, and she should be calling me back sometime today, most likely early....
Yes, the Cleveland Clinic is a major health facility in Cleveland, the hospital I was supposed to go to originally, was Hillcrest, which is an affiliate of Cleveland Clinic.....
Thank you for your kind words of support, it helps me drastically...I'm much better today....will let you know what I hear....Your friend, J.T.
Momof2sons
03-11-2008, 11:07 AM
J.T.,
So GLAD to hear your going to Cleveland Clinic! Your in GOOD HANDS! I go to a Mayo clinic here in Florida, its SO important to be in the BEST hands, what a relief!
They have come such a long way today in the medical field treating difficult , Rare, and what seem impossible diseases, your at a place where they are at the top of the field, your going to be ok my friend.
Please let me know if you can when they are scheduling you for surgery.
Take care, stay strong, and of course continued prayers going out to you!
God bless,
Annette
So GLAD to hear your going to Cleveland Clinic! Your in GOOD HANDS! I go to a Mayo clinic here in Florida, its SO important to be in the BEST hands, what a relief!
They have come such a long way today in the medical field treating difficult , Rare, and what seem impossible diseases, your at a place where they are at the top of the field, your going to be ok my friend.
Please let me know if you can when they are scheduling you for surgery.
Take care, stay strong, and of course continued prayers going out to you!
God bless,
Annette
jtomishin
03-11-2008, 11:28 AM
I've got most of the scoop right now...Surgery is next Wed. March 19th, at Cleveland Clinic...what time I won't know until the day before...they changed
oncologists because the one they wanted originally would not be available...I now have the Head Chairman of oncology in this field, at Cleveland Clinic to assist him, which I am pretty glad of...
I meet with him this Friday, but have to run over to the other hospital way over on the other side of town same day, for the urodynamic testing, they did the best they could as far as appointments go, so that's what I will have to do that's all...they want to do blood work also to see if there is an elevation of blood cells which tells them there is a problem right there...
I meet with my Dr. on Tuesday, the day before my surgery, back at Cleveland Clinic, and that will be it.....
THANK YOU so much for your support and on going prayers....I probably will be working 1/2 day on Tuesday, day before surgery, when I meet with my own Dr., as Cleveland Clinic is somewhat in downtown Cleveland, and I work downtown, so I can just scoot over there....hopefully...if appointments stay the same....God Bless and appreciate so much all of your prayers....J.T.
oncologists because the one they wanted originally would not be available...I now have the Head Chairman of oncology in this field, at Cleveland Clinic to assist him, which I am pretty glad of...
I meet with him this Friday, but have to run over to the other hospital way over on the other side of town same day, for the urodynamic testing, they did the best they could as far as appointments go, so that's what I will have to do that's all...they want to do blood work also to see if there is an elevation of blood cells which tells them there is a problem right there...
I meet with my Dr. on Tuesday, the day before my surgery, back at Cleveland Clinic, and that will be it.....
THANK YOU so much for your support and on going prayers....I probably will be working 1/2 day on Tuesday, day before surgery, when I meet with my own Dr., as Cleveland Clinic is somewhat in downtown Cleveland, and I work downtown, so I can just scoot over there....hopefully...if appointments stay the same....God Bless and appreciate so much all of your prayers....J.T.
Momof2sons
03-11-2008, 12:52 PM
J.T.,
Well you cant get better than that, Head Chairman of Oncology thats fantastic! This is awesome news!
Thats one thing I LOVE about Mayo clinic, is that I TRUST them with my life. When I was headed in for surgery on my lungs and brain surgery for that matter, people kept asking me if I was scared, I answered them truthfully, "absolutly NOT"! I have such a peace about me, and I believe that in the end, its in Gods hands, and being in GODS hands COMBINED with AWESOME DOCTORS, your doing ALL you can, at having the best chances. No one can do better than that!~
Thank you so much for the update, this is great news with the doctors, I'll be here if you need to chat, Take care, and stay strong my friend!
God bless,
Annette
Well you cant get better than that, Head Chairman of Oncology thats fantastic! This is awesome news!
Thats one thing I LOVE about Mayo clinic, is that I TRUST them with my life. When I was headed in for surgery on my lungs and brain surgery for that matter, people kept asking me if I was scared, I answered them truthfully, "absolutly NOT"! I have such a peace about me, and I believe that in the end, its in Gods hands, and being in GODS hands COMBINED with AWESOME DOCTORS, your doing ALL you can, at having the best chances. No one can do better than that!~
Thank you so much for the update, this is great news with the doctors, I'll be here if you need to chat, Take care, and stay strong my friend!
God bless,
Annette
Momof2sons
03-13-2008, 11:14 AM
J.T,
Thanks for responding. I do understand what your going through and its scarey but remember one thing, your NEVER truely alone, God is with you, people are praying for you, and dont be afraid to pray for YOURSELF you are as deserving as anyone. He walks with us ALL my friend.
I will look forward for your return to work, to get an update. Stay strong, be safe, speedy recovery, and of course, GOd bless!
Annette
Thanks for responding. I do understand what your going through and its scarey but remember one thing, your NEVER truely alone, God is with you, people are praying for you, and dont be afraid to pray for YOURSELF you are as deserving as anyone. He walks with us ALL my friend.
I will look forward for your return to work, to get an update. Stay strong, be safe, speedy recovery, and of course, GOd bless!
Annette
Momof2sons
03-17-2008, 11:27 AM
J.T.,
Best of luck tomorrow, continued prayers for your speedy recovery! Will be watching for your return. God bless my friend!
Take care, and stay strong,
Annette
Best of luck tomorrow, continued prayers for your speedy recovery! Will be watching for your return. God bless my friend!
Take care, and stay strong,
Annette
jtomishin
03-17-2008, 11:52 AM
Annette, thank you for your continued prayers...was a long day at the clinic on Friday, the Primary Physician, the oncologist Gyn, had an emergency, which was fine, I would like to think that other people would be as understanding if it were me., so I was there over 5 hours..He had to examine me also, and said he really couldn't feel anything, which doesn't mean much other than he would find out what is going on once I am opened up, he said he couldn't honestly say until then, and that would be the only way.......
that blood work test they took, what's it called, the CS125, came up normal also, an 18, but that doesn't rule out things...in his eyes is only 25% accurate, and they, meaning research, are trying to come up with something that can detect early ovarian cancer in women by the blood work, other than that other test, since that test is not all that reliable in early cancer..this is something they are just "working" on now, they have not come up with anything definite yet.....they descend on you there like a hawk, wanting you to participate in things...I agreed to a number of things, but after awhile I had to back out...that was enough for me....they actually made me late for my other appointment at the other hospital...Went to Urodynamics at the other hospital then, that was lots of fun, ugh...glad that is over....again, Annette, thank you so very much for your support and prayers, I will take all the prayers I can get.....
My surgery is for Wednesday of this week, the 19th...will not be in tomorrow as I have to go through some more things at the clinic...admitting, etc....thank you again...God Bless....Janet
that blood work test they took, what's it called, the CS125, came up normal also, an 18, but that doesn't rule out things...in his eyes is only 25% accurate, and they, meaning research, are trying to come up with something that can detect early ovarian cancer in women by the blood work, other than that other test, since that test is not all that reliable in early cancer..this is something they are just "working" on now, they have not come up with anything definite yet.....they descend on you there like a hawk, wanting you to participate in things...I agreed to a number of things, but after awhile I had to back out...that was enough for me....they actually made me late for my other appointment at the other hospital...Went to Urodynamics at the other hospital then, that was lots of fun, ugh...glad that is over....again, Annette, thank you so very much for your support and prayers, I will take all the prayers I can get.....
My surgery is for Wednesday of this week, the 19th...will not be in tomorrow as I have to go through some more things at the clinic...admitting, etc....thank you again...God Bless....Janet
Momof2sons
03-17-2008, 02:14 PM
Janet,
YEs the Urodynamic testing is such a joy! NOT! But the way I think of it is at least there are tests to try to determine the cause. I've had approx 5-6 over the last 10 years, in 4 different states, and they all have their own little unique way of doing them, but the end means are basicly the same.
Yes, I've had the CA125 done at MY request, and my primary Doc was reluctant to do it because she said as you mentioned, it has little meaning because it wasnt very accurate. Wonder if the one you had CS125 is new?
Yes they DO descend on you at Major medical facilities, Mayo did that to me also. But I was a willing party. I can understand with you, you can only DO SO MANY! Totaly understand that! I had become part of a study for lung cancer, before they did the "staging" procedure, lots of paper work to sign, with extra biopsies taken. With mine all being begnine, they STILL were'nt sure. Biopsies are so small that even a negative results isnt 100%. Cells can be missed, so in my opinion, Im glad they went in and took it out, that really IS the only 100% way they can tell. I'm so praying for a negative results for YOU as well!
I will certiantly continue to pray for that! Take care, and GOd bless my friend! Will look forward to your return.
Annette
YEs the Urodynamic testing is such a joy! NOT! But the way I think of it is at least there are tests to try to determine the cause. I've had approx 5-6 over the last 10 years, in 4 different states, and they all have their own little unique way of doing them, but the end means are basicly the same.
Yes, I've had the CA125 done at MY request, and my primary Doc was reluctant to do it because she said as you mentioned, it has little meaning because it wasnt very accurate. Wonder if the one you had CS125 is new?
Yes they DO descend on you at Major medical facilities, Mayo did that to me also. But I was a willing party. I can understand with you, you can only DO SO MANY! Totaly understand that! I had become part of a study for lung cancer, before they did the "staging" procedure, lots of paper work to sign, with extra biopsies taken. With mine all being begnine, they STILL were'nt sure. Biopsies are so small that even a negative results isnt 100%. Cells can be missed, so in my opinion, Im glad they went in and took it out, that really IS the only 100% way they can tell. I'm so praying for a negative results for YOU as well!
I will certiantly continue to pray for that! Take care, and GOd bless my friend! Will look forward to your return.
Annette
jtomishin
03-17-2008, 02:25 PM
Annette, no, the blood test I had done was the CA125, yikes, I called it the CS125, well, I was close....
No, that is what they are working on, developing a test that can define EARLY cancer, but they have a way to go on that yet....
If it is benign, they throw everything out....
You have been through so much...I can hardly believe it all...
Take care Annette...and my deepest thank you for the support and prayers....
J.T.
No, that is what they are working on, developing a test that can define EARLY cancer, but they have a way to go on that yet....
If it is benign, they throw everything out....
You have been through so much...I can hardly believe it all...
Take care Annette...and my deepest thank you for the support and prayers....
J.T.
Momof2sons
03-17-2008, 03:08 PM
Janet,
LOL...Yes, you were close, One KEY OVER<<<<<..haha..too funny! The delete key is MY friend..haha
Believe it or not, going through things like this makes us stronger, and it will make you stronger as well. And someday, YOU will be helping someone like yourself who is going through something similar.
I was on your end myself at one point not too long ago when going through all the testing for the muscle disease. As I had mentioned it was online, that I had my best support system. To interact with someone who's going through something similar, lets you see the light somehow.
You will look back at all this someday, and see the strength it gave you. What is it they say..."This TOO shall pass"...
Be well, stay strong, and GOd bless,
Annette
LOL...Yes, you were close, One KEY OVER<<<<<..haha..too funny! The delete key is MY friend..haha
Believe it or not, going through things like this makes us stronger, and it will make you stronger as well. And someday, YOU will be helping someone like yourself who is going through something similar.
I was on your end myself at one point not too long ago when going through all the testing for the muscle disease. As I had mentioned it was online, that I had my best support system. To interact with someone who's going through something similar, lets you see the light somehow.
You will look back at all this someday, and see the strength it gave you. What is it they say..."This TOO shall pass"...
Be well, stay strong, and GOd bless,
Annette
jtomishin
05-19-2008, 10:16 AM
Hi Annette, well, I'm finally back, and it's good to be back....
Well, during surgery they did find cancer...it was in my fallopian tube, right hand side only, all self contained..plus one lymph node, very small also., had cancer..he did a compete resection there ...so, all cancer is gone except for microscopic cells which showed up in the peritoneal washings, which also showed up malignant, which is what the chemotherapy will take care of...I am in the third stage because it had spread the way it did to the lymph node, had it not, it would of been in a different stage...Dr. was surprised, did not expect to find any cancer...he told me the chemo was for precautionary reasons, and that I would be going through 6 rounds of it, in about a 5 month period...well, when I went in for my 4 week check up with him, he was on the computer and hands me a sheet that tells me women in my stage have about a 3 year survival rate...was stunned...he is very analytical, looks at averages, good surgeon, but not the best bed side manner....well, I flew to Houston Texas for a second opinion, whcih I am entitled to, and someway (God's help, that's how) I got in with the top Oncologist in this file of Ovarian and Fallopian tube cancer (Fallopian tube cancer is treated the same as ovarian cancer)...this hospital is M.D. Anderson, by the way, anyway, he examined me, also ran some tests, and goes before a board of doctors who go over your test results and findings (they had the results sent to them from the clinic from my surgery etc.)...and he said if even one Dr. seems to differ on the treatment plan, he lets you know..well, it seems they all agree with the Cleveland Clinic, the standard procedure of 6 rounds...He feels very optimistic for me, as he said, I am not the typical average patient that they take these percentages from...he said I was different, they caought the cancer, I had a resection, and it is all in my favor...so, with prayers and God's blessings, I will make it through this I am sure...I have had one chemo treatment already, go every 21 days, as long as the blood cell count etc. is at the level it should be...it's rough, but life isn't always easy, you just take it as it comes...they are glad they caught it when they did, had it not been for my bladder, who knows how far things could have gotten?? please keep praying for me...thank you so much...love, J.
Well, during surgery they did find cancer...it was in my fallopian tube, right hand side only, all self contained..plus one lymph node, very small also., had cancer..he did a compete resection there ...so, all cancer is gone except for microscopic cells which showed up in the peritoneal washings, which also showed up malignant, which is what the chemotherapy will take care of...I am in the third stage because it had spread the way it did to the lymph node, had it not, it would of been in a different stage...Dr. was surprised, did not expect to find any cancer...he told me the chemo was for precautionary reasons, and that I would be going through 6 rounds of it, in about a 5 month period...well, when I went in for my 4 week check up with him, he was on the computer and hands me a sheet that tells me women in my stage have about a 3 year survival rate...was stunned...he is very analytical, looks at averages, good surgeon, but not the best bed side manner....well, I flew to Houston Texas for a second opinion, whcih I am entitled to, and someway (God's help, that's how) I got in with the top Oncologist in this file of Ovarian and Fallopian tube cancer (Fallopian tube cancer is treated the same as ovarian cancer)...this hospital is M.D. Anderson, by the way, anyway, he examined me, also ran some tests, and goes before a board of doctors who go over your test results and findings (they had the results sent to them from the clinic from my surgery etc.)...and he said if even one Dr. seems to differ on the treatment plan, he lets you know..well, it seems they all agree with the Cleveland Clinic, the standard procedure of 6 rounds...He feels very optimistic for me, as he said, I am not the typical average patient that they take these percentages from...he said I was different, they caought the cancer, I had a resection, and it is all in my favor...so, with prayers and God's blessings, I will make it through this I am sure...I have had one chemo treatment already, go every 21 days, as long as the blood cell count etc. is at the level it should be...it's rough, but life isn't always easy, you just take it as it comes...they are glad they caught it when they did, had it not been for my bladder, who knows how far things could have gotten?? please keep praying for me...thank you so much...love, J.
Momof2sons
05-19-2008, 12:57 PM
Janet,
It is SO GOOD to HEAR FROM YOU!!! I have been thinking about you, and PRAYING everyday! This is what I truely believe...Your bladder issues were what is known as DEVINE INTERVENTION! As with my brain surgery was which prompted the pre-op chest x-ray finding the lung nodules!
Girlfriend this has Gods hands written all over it! This was ment to be found and delt with! M.D. Anderson is one of the BEST facilities for dealing with this, and as it seems with a much better bed side manner. As to the Doctor at the Cleveland Clinic sounds to be very ANAL and looks at numbers as though it were code. Those statistics are just that, NUMBERS, it dose not take the indiviual patients generalized condition and cicumstances into concideration! Kind of reminds me my surgeon telling me that mine was a "classic case" of lung cancer, and me telling him, I've defied the odds before. He called it deniel, and I called it FAITH! You keep that FAITH my friend, it will take you far! Good for YOU going for that second opinion! Oh, and do me one small favor, if you see that surgeon again, give him a little "smack" for me, and I dont mean a kiss either...SHAME on him!
Well I went back to Mayo in Feb. for a re-scan of my lungs, and I have some new "nodular thickening" in my right lung, at the area they recected. The Pulmonologist said "had" that been cancer, seeing this scan would make her very worried that it was back. She wrote in the report she "thinks" these are benign given the fact the main mass was benign. I HATE that word "think", but the plan is to re-scan in July and take it from there.
Then I went back to see the Cardiologist over there in April, I had a "loop recorder implant" put in which will monitor my heart 24/7. This device is implanted in the chest. The plan there is is to wait for another "event" to happen with my heart then they will know wether its a pacemaker OR a defibulator I need. He needs to make sure what had happened to me in the hospital with my heart taking those long "pauses" IS what happens when my body isnt under stress ie..having surgery. So thats the plan with that.
Anyway my friend ,thank you so much for letting me know how you are! With God, Prayer, Faith, and a positive attitude you will get through ALL of this!
Take care, stay strong,
And GOd bless.
Annette
It is SO GOOD to HEAR FROM YOU!!! I have been thinking about you, and PRAYING everyday! This is what I truely believe...Your bladder issues were what is known as DEVINE INTERVENTION! As with my brain surgery was which prompted the pre-op chest x-ray finding the lung nodules!
Girlfriend this has Gods hands written all over it! This was ment to be found and delt with! M.D. Anderson is one of the BEST facilities for dealing with this, and as it seems with a much better bed side manner. As to the Doctor at the Cleveland Clinic sounds to be very ANAL and looks at numbers as though it were code. Those statistics are just that, NUMBERS, it dose not take the indiviual patients generalized condition and cicumstances into concideration! Kind of reminds me my surgeon telling me that mine was a "classic case" of lung cancer, and me telling him, I've defied the odds before. He called it deniel, and I called it FAITH! You keep that FAITH my friend, it will take you far! Good for YOU going for that second opinion! Oh, and do me one small favor, if you see that surgeon again, give him a little "smack" for me, and I dont mean a kiss either...SHAME on him!
Well I went back to Mayo in Feb. for a re-scan of my lungs, and I have some new "nodular thickening" in my right lung, at the area they recected. The Pulmonologist said "had" that been cancer, seeing this scan would make her very worried that it was back. She wrote in the report she "thinks" these are benign given the fact the main mass was benign. I HATE that word "think", but the plan is to re-scan in July and take it from there.
Then I went back to see the Cardiologist over there in April, I had a "loop recorder implant" put in which will monitor my heart 24/7. This device is implanted in the chest. The plan there is is to wait for another "event" to happen with my heart then they will know wether its a pacemaker OR a defibulator I need. He needs to make sure what had happened to me in the hospital with my heart taking those long "pauses" IS what happens when my body isnt under stress ie..having surgery. So thats the plan with that.
Anyway my friend ,thank you so much for letting me know how you are! With God, Prayer, Faith, and a positive attitude you will get through ALL of this!
Take care, stay strong,
And GOd bless.
Annette
jtomishin
05-19-2008, 01:45 PM
Annette, so good to hear from you also! I need positive feedback, and you made my day, thank you...yes, I feel I will make it just fine, God has certainly been there for me, the prayers have been unbelievable for me, they have poured in from all over!! and I thank you so much for yours, that has truly made a difference....
Oh Annette, your lungs will be fine, just as before, God is there for you just as he was beside you before...I will continue praying for you also for that device implanted in your chest to monitor your heart that all works out, which I am sure it will, and for July when they plan on rescanning your lungs....you will be fine, you are strong, and have the faith...I am a lot stronger now I feel than I have ever been..sometimes it takes something crucial in your life to make you see and change things that you should have before, you know?? I will be praying for you...we have a worldwide prayer list we have here at work, where your name is put in and prayers are said for you all over the world, yours will be included...last name not needed, God knows who we are...take care...love, J.
Oh Annette, your lungs will be fine, just as before, God is there for you just as he was beside you before...I will continue praying for you also for that device implanted in your chest to monitor your heart that all works out, which I am sure it will, and for July when they plan on rescanning your lungs....you will be fine, you are strong, and have the faith...I am a lot stronger now I feel than I have ever been..sometimes it takes something crucial in your life to make you see and change things that you should have before, you know?? I will be praying for you...we have a worldwide prayer list we have here at work, where your name is put in and prayers are said for you all over the world, yours will be included...last name not needed, God knows who we are...take care...love, J.
jtomishin
06-25-2008, 12:03 PM
Annette, it amazes me some times that I still have a job!! I will start over again, as I do not know where I sent it to, yikes....
I am so glad you had your vacation as planned!! I would of made the same call as far as them wanting you to stay in ER, I wouldn't have either, and for the very same reasons!! sorry to hear about your cardiac implant getting infected...your alright now, right?? was it for the same reason the other two times, or was it for something else?? I feel bad that you had problems, but so glad you did go ahead with your plans!! honestly, how are you feeling now??
So glad you had a good time with your sons though and was able to be with them, well, I know you were with the one, but I mean the other also that you visited...did you see some wonderful sights??
I finished my third treatment, and am onto my fourth come, July 9th...After my second treatment, I had a bad allergic reaction...couldn't breathe, ..they gave me a "triple " dose of Benadryl, triple cocktail they called it...anyway, it worked... this next time, it was only slight, and I doubt I will have it anymore...scary though....on the 7th I will have a cat scan (which is midway ) and then again three weeks or so after my sixth I believe, if I have it right...I take a shot called Neulasta now, which is given to me the day after each chemo treatment...it builds up the white cell count, as it went down some and they were afraid it would of put my chemo off, but it managed to come back up the day before treatment, but he ordered these shots now, (my Dr.) so it helps with the bone marrow...very painful after about 3-4 days, (side effects) and it's time released, so, it kind of keeps going, but maybe not as bad as it was...bones throb, terribly, kind of hard to walk at times...but that's all a part of it, so you take what's handed to you and go on from there...... Let me know how you are doing today, okay?? all is okay as far as infections, etc...??? waiting to hear from you....love, J.
I am so glad you had your vacation as planned!! I would of made the same call as far as them wanting you to stay in ER, I wouldn't have either, and for the very same reasons!! sorry to hear about your cardiac implant getting infected...your alright now, right?? was it for the same reason the other two times, or was it for something else?? I feel bad that you had problems, but so glad you did go ahead with your plans!! honestly, how are you feeling now??
So glad you had a good time with your sons though and was able to be with them, well, I know you were with the one, but I mean the other also that you visited...did you see some wonderful sights??
I finished my third treatment, and am onto my fourth come, July 9th...After my second treatment, I had a bad allergic reaction...couldn't breathe, ..they gave me a "triple " dose of Benadryl, triple cocktail they called it...anyway, it worked... this next time, it was only slight, and I doubt I will have it anymore...scary though....on the 7th I will have a cat scan (which is midway ) and then again three weeks or so after my sixth I believe, if I have it right...I take a shot called Neulasta now, which is given to me the day after each chemo treatment...it builds up the white cell count, as it went down some and they were afraid it would of put my chemo off, but it managed to come back up the day before treatment, but he ordered these shots now, (my Dr.) so it helps with the bone marrow...very painful after about 3-4 days, (side effects) and it's time released, so, it kind of keeps going, but maybe not as bad as it was...bones throb, terribly, kind of hard to walk at times...but that's all a part of it, so you take what's handed to you and go on from there...... Let me know how you are doing today, okay?? all is okay as far as infections, etc...??? waiting to hear from you....love, J.
Momof2sons
06-25-2008, 10:03 PM
Janet,
Yes the two other visits to the ER were for the same thing. They wanted to keep an eye on it to make sure it was healing. Yes it appears to be gone at the moment, THank GOd. I'm hanging in there. I'm still trying to learn this whole thing with "pacing yourself"! I usually push myself too hard one day, and pay for it the next few days with weakness, muscle pain, and of course the fatigue that never leaves. I take a couple naps every day trying to catch up, but that never seems to happen. I just keep pushing forward, and refuse to let this totaly ruin my life, just need to improve my "pacing skills". That's a hard thing to do when I was always so active and my job was so physical, but I will get it, eventually...
I did re-scan in Febuary for my lungs and have two new nodules in my right lung(which is the one they removed part of). So I have to re-scan again in August. They had scheduled me for re-scan for July, and a follow up with my cardiologist at the same time, but for some reason I recieved a "revised" schedule while I was on vacation and it was changed to August. I think Im going to call them though and see if they can change it back to July. I've been having those same "twinges" of pain in my chest, and numbness in my arm as I had before when the MAI infection was growing. The report the pulmonologist wrote after the re-scan in Feb. said I "think" the new nodular growth are benign given the fact the main lesion that was removed was benign. I just hate the word "THINK"...and given the fact this dang muscle disease can make me more suseptable to malignancy, just seems to keep me on edge all the time. But all I can do is keep all my appts. and hope for the best. I also made an appt. today to have another inturnal ultrasound to check my ovaries again. I was supose to have one in March , but with all the lung business going on I put it off. I have been getting cysts on my right ovary for a few years now, and my left ovary had went into hiding. Well my last ultrasound showed the 4 cysts on my right ovary had went down, but my left ovary came out of hiding and had two cysts on that. So given all my other issues the GYN wants to make sure these cysts are "functional cysts" as were the ones on my right ovary. Anyway that is scheduled for mid July.
I can imagin how scarey that was for you to have those reactions! I do know what its like to not be able to breath while having reactions and scarey is putting it mildly. Thank GOd the benadryl worked! I will certiantly pray that it dosent happen again!
I'm so sorry to hear about the bone pain your going through right now, and what you have to go through physicaly to rid your body of this terrible beast!
With you keeping the positive attitude, and your wonderful spirit, WILL get you through this my friend!
Continued prayers are coming your way and will also pray your white cells stay up, you have amazing positive results with CT scan on July 7th, and soon this will all be a battle YOU CONQUERED!
Many HUGS, Continued prayers,
God bless, and stay strong
my friend!
Love, Annette
Yes the two other visits to the ER were for the same thing. They wanted to keep an eye on it to make sure it was healing. Yes it appears to be gone at the moment, THank GOd. I'm hanging in there. I'm still trying to learn this whole thing with "pacing yourself"! I usually push myself too hard one day, and pay for it the next few days with weakness, muscle pain, and of course the fatigue that never leaves. I take a couple naps every day trying to catch up, but that never seems to happen. I just keep pushing forward, and refuse to let this totaly ruin my life, just need to improve my "pacing skills". That's a hard thing to do when I was always so active and my job was so physical, but I will get it, eventually...
I did re-scan in Febuary for my lungs and have two new nodules in my right lung(which is the one they removed part of). So I have to re-scan again in August. They had scheduled me for re-scan for July, and a follow up with my cardiologist at the same time, but for some reason I recieved a "revised" schedule while I was on vacation and it was changed to August. I think Im going to call them though and see if they can change it back to July. I've been having those same "twinges" of pain in my chest, and numbness in my arm as I had before when the MAI infection was growing. The report the pulmonologist wrote after the re-scan in Feb. said I "think" the new nodular growth are benign given the fact the main lesion that was removed was benign. I just hate the word "THINK"...and given the fact this dang muscle disease can make me more suseptable to malignancy, just seems to keep me on edge all the time. But all I can do is keep all my appts. and hope for the best. I also made an appt. today to have another inturnal ultrasound to check my ovaries again. I was supose to have one in March , but with all the lung business going on I put it off. I have been getting cysts on my right ovary for a few years now, and my left ovary had went into hiding. Well my last ultrasound showed the 4 cysts on my right ovary had went down, but my left ovary came out of hiding and had two cysts on that. So given all my other issues the GYN wants to make sure these cysts are "functional cysts" as were the ones on my right ovary. Anyway that is scheduled for mid July.
I can imagin how scarey that was for you to have those reactions! I do know what its like to not be able to breath while having reactions and scarey is putting it mildly. Thank GOd the benadryl worked! I will certiantly pray that it dosent happen again!
I'm so sorry to hear about the bone pain your going through right now, and what you have to go through physicaly to rid your body of this terrible beast!
With you keeping the positive attitude, and your wonderful spirit, WILL get you through this my friend!
Continued prayers are coming your way and will also pray your white cells stay up, you have amazing positive results with CT scan on July 7th, and soon this will all be a battle YOU CONQUERED!
Many HUGS, Continued prayers,
God bless, and stay strong
my friend!
Love, Annette
jtomishin
06-26-2008, 03:37 PM
Annette, sorry its take me this long to reply....
I am glad to hear that your cardiac implant infection has not returned and you seem to be doing alright with that...feel bad that you even had to go to the ER during your vacation, but good to know that there was some place you could turn to also...
You have a lot going on in your life right now, but you know, I give you credit for pushing yourself the way you do...overdoing it, no, but I think it is so much better than what others would do, which would be to just take it easy and do nothing much at all...it is so much better to remain active, even when you don't want to...it also gives you a healthier state of mind....just don't over do...
Don't let yourself think things when it comes to the nodules in your lungs or you will be on the edge all the time...you kept your faith before, just keep going with it...you will be on my prayer list as before, and I will continue to keep you there...the same goes for the condition with your ovaries..I'm sure you are going to be just fine there as you were with the other side before then...it's easy to let one's defense down when so many things seem to hit at once....your strong, you just keep it that way...
You keep me posted as to how the test results come whenever you may get them and I will with you....you have a wonderful weekend, let yourself think all good thoughts...take a deep breath and go on from there....
Please know you are in my thoughts and prayers....stay strong...love, J
I am glad to hear that your cardiac implant infection has not returned and you seem to be doing alright with that...feel bad that you even had to go to the ER during your vacation, but good to know that there was some place you could turn to also...
You have a lot going on in your life right now, but you know, I give you credit for pushing yourself the way you do...overdoing it, no, but I think it is so much better than what others would do, which would be to just take it easy and do nothing much at all...it is so much better to remain active, even when you don't want to...it also gives you a healthier state of mind....just don't over do...
Don't let yourself think things when it comes to the nodules in your lungs or you will be on the edge all the time...you kept your faith before, just keep going with it...you will be on my prayer list as before, and I will continue to keep you there...the same goes for the condition with your ovaries..I'm sure you are going to be just fine there as you were with the other side before then...it's easy to let one's defense down when so many things seem to hit at once....your strong, you just keep it that way...
You keep me posted as to how the test results come whenever you may get them and I will with you....you have a wonderful weekend, let yourself think all good thoughts...take a deep breath and go on from there....
Please know you are in my thoughts and prayers....stay strong...love, J
Momof2sons
07-08-2008, 02:05 PM
Janet,
Just checking up on you to see how your doing with treatments. You have been on my mind and in my prayers as always, so thought I'd pop in and see how things are going.
I called a Nurse today who is a specialist in the MAC infection at a highly rated facility. She highly recomends I have a serious talk with my Pulmonologist reguarding starting treatment for this. Of course she recomended me coming there which is thousands of miles away, and thats just not possible. I called her because all the others who have this infection that I talk with have been on treatment. Being the fact you have a better chance of recovery or at least slowing it down with aggressive treatment. So now I guess Im going to have to question my Pulm Doc as to why she feels I don't need treatment at this time. The fact is IF she feels as it says in her report that these new nodules are benign, then I "assume" she feels its the MAC infection, so WHY NO treatment? The whole thing has me confused. I do know I don't need this to get out of hand. I have enough medical problems without that happening. So looks like I will have to ask her when I see her again next month for the re-scan.
Anyway, please let me know how your doing. Looking forward to hearing from you.
Take care my friend!
Stay strong, and God bless.
Annette
Just checking up on you to see how your doing with treatments. You have been on my mind and in my prayers as always, so thought I'd pop in and see how things are going.
I called a Nurse today who is a specialist in the MAC infection at a highly rated facility. She highly recomends I have a serious talk with my Pulmonologist reguarding starting treatment for this. Of course she recomended me coming there which is thousands of miles away, and thats just not possible. I called her because all the others who have this infection that I talk with have been on treatment. Being the fact you have a better chance of recovery or at least slowing it down with aggressive treatment. So now I guess Im going to have to question my Pulm Doc as to why she feels I don't need treatment at this time. The fact is IF she feels as it says in her report that these new nodules are benign, then I "assume" she feels its the MAC infection, so WHY NO treatment? The whole thing has me confused. I do know I don't need this to get out of hand. I have enough medical problems without that happening. So looks like I will have to ask her when I see her again next month for the re-scan.
Anyway, please let me know how your doing. Looking forward to hearing from you.
Take care my friend!
Stay strong, and God bless.
Annette
jtomishin
07-08-2008, 03:47 PM
Annette, I can't believe you emailed me, as I had you on my mind since I came in this morning, but was out Thurs-Monday, and had so much to do when I came in this a.m., and never had a chance, till now....
You know that is an interesting point about why they haven't started you on treatment, especially with all of your other health problems...I would definitely ask about this also....Just knowing you could have a better chance of recovery from this by getting the treatment would make me second guess as to why treatment is not in the plan for now??? maybe you could talk to her before your scheduled appointment, do you think???
I've been fine, I went Monday (yesterday) for the cat scan, ugh, wish that was all I had to do was drink that stuff, but of course since I am allergic to iodine, they had to give me something different than the dye contrast they usually use, so I drank that barium and of course they have to do it along with seeing your large intestines etc,. if you know what I mean, not so pleasant, but I will just have to get used to it, as I will be getting a lot of these over the years....my white count is fine, so I can go ahead with the fourth treatment tomorrow of chemo, and the next day that shot of Neulasta to keep my white count up, so at least I am moving ahead....will find out about the cat scan tomorrow if all is ok when I see the Dr. before the chemo treatment....enough about me, how are you feeling from day to day now??thinking of you every day and as usual, praying for you also...take care and let me know how you are and if that infection you had on your trip is staying away and not coming back....hugs and prayers....J
You know that is an interesting point about why they haven't started you on treatment, especially with all of your other health problems...I would definitely ask about this also....Just knowing you could have a better chance of recovery from this by getting the treatment would make me second guess as to why treatment is not in the plan for now??? maybe you could talk to her before your scheduled appointment, do you think???
I've been fine, I went Monday (yesterday) for the cat scan, ugh, wish that was all I had to do was drink that stuff, but of course since I am allergic to iodine, they had to give me something different than the dye contrast they usually use, so I drank that barium and of course they have to do it along with seeing your large intestines etc,. if you know what I mean, not so pleasant, but I will just have to get used to it, as I will be getting a lot of these over the years....my white count is fine, so I can go ahead with the fourth treatment tomorrow of chemo, and the next day that shot of Neulasta to keep my white count up, so at least I am moving ahead....will find out about the cat scan tomorrow if all is ok when I see the Dr. before the chemo treatment....enough about me, how are you feeling from day to day now??thinking of you every day and as usual, praying for you also...take care and let me know how you are and if that infection you had on your trip is staying away and not coming back....hugs and prayers....J
Momof2sons
07-08-2008, 04:21 PM
Janet,
Hmmm...must be that "E..S..P.." thing working..Ya think?..haha
It looks like I have to wait until August to talk to her about all this. Orignaly my appt was scheduled for July, and while I was on vacation I recieved a revised schedule and it was changed for Aug. Turns out she is on vacation the month of July so thats why the change. So I will have to wait at this point.
Something else I will do while Im there is get a disk of all my scans. Right now I only have a disk for scans up to the point of surgery, so I will get an updated one, that way I can have ALL the info I need if I end up having to look for closer Doctor who specializes in MAC infection for treatment.
The infection in my implant seems to be GONE, which is a good thing. The incision is closed now, so I don't think it will rear its ugly head again..
YUK, that barium stuff is nasty, I sure dont envy you with having to drink that. Unfortunatly it's one of those things you have to do at this point on top of everything else. Good greef! Soon all this will all be over my friend and you will be feeling better. Your spirits sound wonderful and that will get you through all this! So happy to hear you WBC are staying Up!..Sounds like the neulesta is working!
Please let me know how your CT results come back tomorrow. I will certiantly continue praying for you as always!
So good to hear from you!
Take care, and God bless.
Annette
Hmmm...must be that "E..S..P.." thing working..Ya think?..haha
It looks like I have to wait until August to talk to her about all this. Orignaly my appt was scheduled for July, and while I was on vacation I recieved a revised schedule and it was changed for Aug. Turns out she is on vacation the month of July so thats why the change. So I will have to wait at this point.
Something else I will do while Im there is get a disk of all my scans. Right now I only have a disk for scans up to the point of surgery, so I will get an updated one, that way I can have ALL the info I need if I end up having to look for closer Doctor who specializes in MAC infection for treatment.
The infection in my implant seems to be GONE, which is a good thing. The incision is closed now, so I don't think it will rear its ugly head again..
YUK, that barium stuff is nasty, I sure dont envy you with having to drink that. Unfortunatly it's one of those things you have to do at this point on top of everything else. Good greef! Soon all this will all be over my friend and you will be feeling better. Your spirits sound wonderful and that will get you through all this! So happy to hear you WBC are staying Up!..Sounds like the neulesta is working!
Please let me know how your CT results come back tomorrow. I will certiantly continue praying for you as always!
So good to hear from you!
Take care, and God bless.
Annette
jtomishin
07-10-2008, 02:47 PM
Hi Annette, how are you doing today??
Thought I would let you kow how the cat scan went...ithe Dr. said it looked great...I did have some clear fluid built up behind the one lymph node he removed and did a resection on, but that was normal...I guess there was a channel there before the surgery?? anyway, it will take awhile for this to form again ...he examined me also this time and all was fine, and so he said to continue onto my sixth treatment, and hopefully that will be it...so, I have two more to go through....of course I will have to be coming back for future cat scans all the time from now on after the treatment...so that's the news I have....went for chemo yesterday, and they had me hooked up to the IV by9:30 A.M. and the pharmacy usually brings up the chemo drugs from the fax they received the night before listing what is needed and for what patient, well, they had everyone's but mine...it took until 12:00 to come back up with the two they use for me...nurses were not pleased let me tell you...I sat there hooked up until then, and then it was after 4:00 before I was out of there...missed work, as I usually am back by 2:00, and they said not to bother since it was so late already....whew! long day!!...anyway, go for that shot of Neulasta today that builds up my white cell count...know the side effects will be hard to go through again, but it did the trick, it brought up my count beautifully this time, so I have to continue...whatever it takes I say, right??? well, I guess that's all the news I have on myself...anything new with you?? I hope it's good news....am leaving soon for the shot, but will be back tomorrow all day....take care Annette and God bless....J
Thought I would let you kow how the cat scan went...ithe Dr. said it looked great...I did have some clear fluid built up behind the one lymph node he removed and did a resection on, but that was normal...I guess there was a channel there before the surgery?? anyway, it will take awhile for this to form again ...he examined me also this time and all was fine, and so he said to continue onto my sixth treatment, and hopefully that will be it...so, I have two more to go through....of course I will have to be coming back for future cat scans all the time from now on after the treatment...so that's the news I have....went for chemo yesterday, and they had me hooked up to the IV by9:30 A.M. and the pharmacy usually brings up the chemo drugs from the fax they received the night before listing what is needed and for what patient, well, they had everyone's but mine...it took until 12:00 to come back up with the two they use for me...nurses were not pleased let me tell you...I sat there hooked up until then, and then it was after 4:00 before I was out of there...missed work, as I usually am back by 2:00, and they said not to bother since it was so late already....whew! long day!!...anyway, go for that shot of Neulasta today that builds up my white cell count...know the side effects will be hard to go through again, but it did the trick, it brought up my count beautifully this time, so I have to continue...whatever it takes I say, right??? well, I guess that's all the news I have on myself...anything new with you?? I hope it's good news....am leaving soon for the shot, but will be back tomorrow all day....take care Annette and God bless....J
Momof2sons
07-11-2008, 11:13 AM
Janet,
What FANTASTIC news! Praise GOD! Thank you so much for the update. THis will be over soon my friend, and you can really get started living again! This news has made my day...Thanks!
SOunds like someone was'nt on the ball yesterday with making your chemo and having it ready. I do know it takes time to prepare, I used to work for a hospital pharmacy as a lab tech, and remember them having to prepare the chemo for patients so many hours before they needed it. So someone dropped the ball. But glad you were able to get it done yesterday dispite the delay, it sure does make for a long day! I sure hope work did'nt give you a hard time about it as it was out of your control.
SO happy to hear the shot is working with keeping you WBC's up! That can such an issue with chemo, and patients being able to continue treatments. THat's great!
I'm doing ok thanks. Just waiting for a couple of appts to come up. I have one the 18th of July for social security, and one with the GYN the 24th I think it is. THen seeing my Neuro the 5th of AUg., and back to Mayo the 13th. My life seems to be one Doctor's appt to another at this point. But the GOOD news is my boys will be coming home the 19th of this month! They are flying in to Tampa airport, so will have to take that 600 mile round trip to get them, but will be SOOOO worth IT! Life is so much better when they are here! So I'm really looking forward to getting them home!
Won't be long now, and this will all be a thing of the PAST for you! Keep up the good work!..Keep the faith my freind...Take care and God bless.
Annette
What FANTASTIC news! Praise GOD! Thank you so much for the update. THis will be over soon my friend, and you can really get started living again! This news has made my day...Thanks!
SOunds like someone was'nt on the ball yesterday with making your chemo and having it ready. I do know it takes time to prepare, I used to work for a hospital pharmacy as a lab tech, and remember them having to prepare the chemo for patients so many hours before they needed it. So someone dropped the ball. But glad you were able to get it done yesterday dispite the delay, it sure does make for a long day! I sure hope work did'nt give you a hard time about it as it was out of your control.
SO happy to hear the shot is working with keeping you WBC's up! That can such an issue with chemo, and patients being able to continue treatments. THat's great!
I'm doing ok thanks. Just waiting for a couple of appts to come up. I have one the 18th of July for social security, and one with the GYN the 24th I think it is. THen seeing my Neuro the 5th of AUg., and back to Mayo the 13th. My life seems to be one Doctor's appt to another at this point. But the GOOD news is my boys will be coming home the 19th of this month! They are flying in to Tampa airport, so will have to take that 600 mile round trip to get them, but will be SOOOO worth IT! Life is so much better when they are here! So I'm really looking forward to getting them home!
Won't be long now, and this will all be a thing of the PAST for you! Keep up the good work!..Keep the faith my freind...Take care and God bless.
Annette
jtomishin
07-11-2008, 12:53 PM
Annette, yes, I was relieved to hear the news so far...I will have to come back like I said for a long long time for future cat scans...there was a woman there in the chemo room that was talking to me, and she said she has been fighting this for 12 years now, and they keep her "maintained" and she is thankful enough for that...she asked me was this my "first round", I thought she meant was this my first chemo treatment, so I said no, this is my fourth, but she said she meant is this is my very first round of treatments I am getting, and I said, well, yes, and she said she had the same years ago, but it came back and here she is fighting now for 12 years....I know this can recur, but really brings me down to hear this , and it's not the first time, oh well, I will just keep praying like I have, I have God to lean on and my wonderful family....
Please keep me posted as to how YOUR appointments go, ok Annette?? so glad to hear your boys are coming down to be with you!! that's terrific!!staying, or visiting??? You stay strong ...love and prayers...J.
Please keep me posted as to how YOUR appointments go, ok Annette?? so glad to hear your boys are coming down to be with you!! that's terrific!!staying, or visiting??? You stay strong ...love and prayers...J.
jtomishin
07-22-2008, 10:01 AM
Hi Annette...doing ok...fatigue comes and goes..just when I think that I can't do much more, I perk up!!! .....fighting bladder infections now (which has always been my "achilles heel".... from the build up of the chemo now ) am on medications for that, and believe that the mesh they put in me is not holding up.. well, they were afraid the chemo would do a number to it and it is...nothing they can do right now until treatments are over and what they will do I don't have a clue until I see the Dr...don't know if I really want to know right now anyway (ha ha)...but really, I'm doing ok...chemo again next Wed...my 5th...so I am getting closer!!
Now, how about you?? You haven't had any of your appointments yet, have you?? wasn't the pulmonary one in August?? how have you been feeling?? How is your visit going with your sons??
I will let you know how things go next week...I have lots of questions for the Dr. before the chemo treatment starts....
Take care Annette...my prayers and thoughts are with you always....J.
Now, how about you?? You haven't had any of your appointments yet, have you?? wasn't the pulmonary one in August?? how have you been feeling?? How is your visit going with your sons??
I will let you know how things go next week...I have lots of questions for the Dr. before the chemo treatment starts....
Take care Annette...my prayers and thoughts are with you always....J.
Momof2sons
07-22-2008, 08:13 PM
Janet,
I'm glad to hear you at least get some relief with the fatigue with the "perk up's". Your right you ARE getting closer to the end of treatment and the best way to look at it for sure! Please let me know how your Doctors visit goes.
I'm doing ok , hanging in there. I have my GYN appt with inturnal ultrasound (for my ovaries) Thursday which the Doctor herself does, so I will get results right there which is good. I hate the waiting game when it comes to testing like that.
Then I have an appt with my Neuro the 5th of August.
My Pulmonary appt. is Aug 13th at Mayo, my Neurologist has been trying to get a local Pulm doc to see me so I wouldn't have to travel so far, today I recieved an appt with one, so I called my insurance and low and behold he is out of network. I'm not going to pay out of network fees with a local doctor. So I canceled that, and called the neuro's office and gave them three names of Pulm doc's who are IN network will be interesting if any of them "take me on"! The last local one I went to told me to consider myself "married to Mayo clinic" it was too complex for him, handed me ALL my records back and that was that. It's obvious I would go to Mayo(even thou they are out of network) if I ever needed anything done that requires sedation, but for CT scans or x-rays there is no sence in traveling 600 miles for. I want to go to Mayo for this one anyway so I can get a disk of the last two CT scans and reports so I will have all the records.
My boys are fantastic! It's great to have them both here! The weather has been SO hot, in the low 100's so breathing is tough out there, so have really been spending most of the time in the house. They haven't complained YET...which is good! So far so good. I just wish I could do more with them. I was hoping to take them to Busch Gardens(thats a 600 mile round trip) before my oldest goes home, and before my youngest starts school(he starts school the 18th), NOT sure how that will work out with all these Doctor's appts but we will see. I just won't mention going until I know I can do it.
Anyway, know I have continued prayers for you!((((((Hugs))))))) Take care, stay strong, and GOd bless.
Annette
I'm glad to hear you at least get some relief with the fatigue with the "perk up's". Your right you ARE getting closer to the end of treatment and the best way to look at it for sure! Please let me know how your Doctors visit goes.
I'm doing ok , hanging in there. I have my GYN appt with inturnal ultrasound (for my ovaries) Thursday which the Doctor herself does, so I will get results right there which is good. I hate the waiting game when it comes to testing like that.
Then I have an appt with my Neuro the 5th of August.
My Pulmonary appt. is Aug 13th at Mayo, my Neurologist has been trying to get a local Pulm doc to see me so I wouldn't have to travel so far, today I recieved an appt with one, so I called my insurance and low and behold he is out of network. I'm not going to pay out of network fees with a local doctor. So I canceled that, and called the neuro's office and gave them three names of Pulm doc's who are IN network will be interesting if any of them "take me on"! The last local one I went to told me to consider myself "married to Mayo clinic" it was too complex for him, handed me ALL my records back and that was that. It's obvious I would go to Mayo(even thou they are out of network) if I ever needed anything done that requires sedation, but for CT scans or x-rays there is no sence in traveling 600 miles for. I want to go to Mayo for this one anyway so I can get a disk of the last two CT scans and reports so I will have all the records.
My boys are fantastic! It's great to have them both here! The weather has been SO hot, in the low 100's so breathing is tough out there, so have really been spending most of the time in the house. They haven't complained YET...which is good! So far so good. I just wish I could do more with them. I was hoping to take them to Busch Gardens(thats a 600 mile round trip) before my oldest goes home, and before my youngest starts school(he starts school the 18th), NOT sure how that will work out with all these Doctor's appts but we will see. I just won't mention going until I know I can do it.
Anyway, know I have continued prayers for you!((((((Hugs))))))) Take care, stay strong, and GOd bless.
Annette
Momof2sons
07-24-2008, 04:27 PM
Janet,
Hi Janet well I went to my GYN appt and the ovaries still have cysts on them but they appear to be "simple cysts" which is good! However they NOW they have found something in my left breast! Because I can't have a mammogram because of the cardiac implant they are sending me for a bilateral breast ultrasound on Monday the 28th. I'm not going to get all worked up about it at this point until I have all the facts here. It could simply be scar tissue left over from the cellulitis infection I had in June with the cardiac implant, at least thats what Im routing for. My Aunt is a breast cancer survivor so there is a risk there, as well as a kidney cancer survivor so better to be safe than sorry right? So I will be going Monday afternoon for that, of course I won't know anything until I hear from the Doctor and when that will be I dont know.
So thats the scoop at this point, I will let you know what they find.
Take care my friend. God bless, and continued prayers.
Annette
Hi Janet well I went to my GYN appt and the ovaries still have cysts on them but they appear to be "simple cysts" which is good! However they NOW they have found something in my left breast! Because I can't have a mammogram because of the cardiac implant they are sending me for a bilateral breast ultrasound on Monday the 28th. I'm not going to get all worked up about it at this point until I have all the facts here. It could simply be scar tissue left over from the cellulitis infection I had in June with the cardiac implant, at least thats what Im routing for. My Aunt is a breast cancer survivor so there is a risk there, as well as a kidney cancer survivor so better to be safe than sorry right? So I will be going Monday afternoon for that, of course I won't know anything until I hear from the Doctor and when that will be I dont know.
So thats the scoop at this point, I will let you know what they find.
Take care my friend. God bless, and continued prayers.
Annette
jtomishin
07-24-2008, 04:53 PM
Dear Annette, you are right, do not get yourself overly stressed over this, please...When I was getting my mammogram about two years ago, they found something also, and I had to go have a breast ultrasound done, and the surgeon was right there to read it no less...it turned out to be fibro-cystic tumors (benign) , (I hope I have this name right) which I have a lot of (they had my history, but I guess they had to be sure)...please, please, don't get upset....I learned my lesson, and you will be fine also....just take a deep breath and put your mind at ease....all will be ok...it seems logical to me that it would be the scar tissure with what you just went through, I know I'm no Dr., but that's how I look at it....I will pray for you as I do every day...do not worry, ok?? hugs and prayers.....J.
(So glad the ovaries were ok...what a relief that had to be!! wonderful!!!)
Let me know on Monday wht is going on with you, ok?? but like I said, all will be fine...)
(So glad the ovaries were ok...what a relief that had to be!! wonderful!!!)
Let me know on Monday wht is going on with you, ok?? but like I said, all will be fine...)
jtomishin
08-01-2008, 09:23 AM
Annette, have not heard from you, know you went to have an ultrasound on Monday, please let me know what is going on with you....
Have been in and out of work with repeated bloodwork as platelets were low, and had to keep going for repeated tests until it came up by itself so that I could get the 5th treatment, which I did, so sorry I haven't gotten back to you until now....
Please let me know how you are, I am very concerned as I haven't heard anything from you.....love and prayers....J.
Have been in and out of work with repeated bloodwork as platelets were low, and had to keep going for repeated tests until it came up by itself so that I could get the 5th treatment, which I did, so sorry I haven't gotten back to you until now....
Please let me know how you are, I am very concerned as I haven't heard anything from you.....love and prayers....J.
Momof2sons
08-01-2008, 09:50 AM
Janet,
Good morning! SO sorry to hear your blood platelets are giving you trouble, but so glad to hear you were able to have your 5th treatment! My memorey stinks as you know and I'm trying to remember how many treatments they were planning for you. It's getting CLOSE I know, but how many more at this point? I know it can't be soon enough for you, but you have comes so far and it will be over with soon! I will continue to pray for you as always my friend, your an amazing STRONG young woman!
I did get my ultrasound but wasn't until Tuesday, there was a "misunderstanding" with the Doctors order, but thats another story. I finally heard results yesterday. It is felt to be "scarring" from the cellulitis infection I had in June thank GOD! I am going today to sign a release to get a copy of my report. I want to have that when I go to Mayo the 13th incase anything shows up on my chest CT scan I will have that report handy.
Take care my friend, Stay strong, Keep the FAITH, and GOd bless.
Continued prayers and Hugs coming your way!
Annette
Good morning! SO sorry to hear your blood platelets are giving you trouble, but so glad to hear you were able to have your 5th treatment! My memorey stinks as you know and I'm trying to remember how many treatments they were planning for you. It's getting CLOSE I know, but how many more at this point? I know it can't be soon enough for you, but you have comes so far and it will be over with soon! I will continue to pray for you as always my friend, your an amazing STRONG young woman!
I did get my ultrasound but wasn't until Tuesday, there was a "misunderstanding" with the Doctors order, but thats another story. I finally heard results yesterday. It is felt to be "scarring" from the cellulitis infection I had in June thank GOD! I am going today to sign a release to get a copy of my report. I want to have that when I go to Mayo the 13th incase anything shows up on my chest CT scan I will have that report handy.
Take care my friend, Stay strong, Keep the FAITH, and GOd bless.
Continued prayers and Hugs coming your way!
Annette
jtomishin
08-01-2008, 10:20 AM
Annette, whew! I feel so much better hearing thsi!! how relieved you must be!! Oh, thank God.....I tell you, prayers sure do help!! Yes, good to have that report ready in your hands when you go to Mayo....you don't know how relieved I feel for you!!!
The planned treatment for me was 6 treatments, so I have only one more to go!! I am having the strongest dose of each drug they could give, and my body has accepted it...I'm not saying it was a breeze, but I know others have had a lot of trouble getting through the treatments and had to be changed to different ones from time to time because of such bad side effects, so I thank the Lord I am getting through this....
I will have to go back every three months for examinations, ugh! and blood work, and twice a year for scans...I know right after my sixth treatment my Dr. has ordered a PET scan and then 6 months later it will be a CT Scan...I think the PET scan is when they inject you with this nuclear stuff, and it can detect any microscopic cancer cells as I believe the cancer cells adhere themselves to this nuclear dye or whatever you call it, and the normal cells don't...(I may not have this exactly right, but close enough)...they think my platelets might be giving me some trouble again, when the last treatment is ready to be given, as it will probably be off again, but they will keep checking with the bloodwork, and can wait up to a week to see if it will come back up, and then an injection may be given, or I may have to receive some platelets if things don't work out...so much toxicity in the body then, can see why things are knocked off kilter for awhile...my 6th treatment is planned for Aug. 20th, so we will see then...taking off for California next Wed, and flying back the following Monday (the 11th) will be back to work on Wed. the 13th...do not like flying, my sister laughs at me, but it terrifies me, but I made it to Texas and back, doesn't help that California just had an earthquake either, ha ha...(L.A.) just where we are going also, where my sister's son, my nephew, lives...oh boy....
Boy my Dad would be rolling his eyes at me today if he was still around...he was a pilot and so was my mother, (small one prop planes) and believe me, I didn't like it any better then, and we always were flying, not that I had any choice back then!!!
Well Annette, I feel so much better hearing your news, I was so worried when I didn't hear anything from you!! Please know you will always be in my prayers, daily, always.....my love and prayers are with you...J.
The planned treatment for me was 6 treatments, so I have only one more to go!! I am having the strongest dose of each drug they could give, and my body has accepted it...I'm not saying it was a breeze, but I know others have had a lot of trouble getting through the treatments and had to be changed to different ones from time to time because of such bad side effects, so I thank the Lord I am getting through this....
I will have to go back every three months for examinations, ugh! and blood work, and twice a year for scans...I know right after my sixth treatment my Dr. has ordered a PET scan and then 6 months later it will be a CT Scan...I think the PET scan is when they inject you with this nuclear stuff, and it can detect any microscopic cancer cells as I believe the cancer cells adhere themselves to this nuclear dye or whatever you call it, and the normal cells don't...(I may not have this exactly right, but close enough)...they think my platelets might be giving me some trouble again, when the last treatment is ready to be given, as it will probably be off again, but they will keep checking with the bloodwork, and can wait up to a week to see if it will come back up, and then an injection may be given, or I may have to receive some platelets if things don't work out...so much toxicity in the body then, can see why things are knocked off kilter for awhile...my 6th treatment is planned for Aug. 20th, so we will see then...taking off for California next Wed, and flying back the following Monday (the 11th) will be back to work on Wed. the 13th...do not like flying, my sister laughs at me, but it terrifies me, but I made it to Texas and back, doesn't help that California just had an earthquake either, ha ha...(L.A.) just where we are going also, where my sister's son, my nephew, lives...oh boy....
Boy my Dad would be rolling his eyes at me today if he was still around...he was a pilot and so was my mother, (small one prop planes) and believe me, I didn't like it any better then, and we always were flying, not that I had any choice back then!!!
Well Annette, I feel so much better hearing your news, I was so worried when I didn't hear anything from you!! Please know you will always be in my prayers, daily, always.....my love and prayers are with you...J.
Momof2sons
08-01-2008, 03:11 PM
Janet,
That's what I was thinking you had ONE MORE to GO, Thank GOD! Soon you will be looking back at all this and be totally amazed at how strong you are my friend, and having God and keeping the faith can get you through!
Remember when we chatted about how these trials in our lives really puts things into perspective? Makes us look at what is really important in life ect...Life is for LIVING, LOVING, ENJOYING, SMILING, and LAUGHING. I believe these trials are there to remind us of that. (I still have to keep reminding myself of this from time to time, but I'm getting there!) I have a wall plaque on my wall and part of it says "Dance as if no one were watching", well I havent gone to that extreem but, my long road trips back and forth to Mayo clinic brings out an "interesting" outlet! I will crank up my radio and sing to the top of my lungs! Thank God I'm ALONE when I do this, and there are some advantages to being DEAF in ONE EAR, hahaha...but its such a release. I can only imagin what other drivers think when they drive by but I find myself not caring what they do think, I haven't caused any accidents so it seems to be harmless...haha. Now if my boys are in the truck with me I have to "TONE DOWN" a bit, they tend to get embarassed for some reason...hmmm I guess I'm not ready for public viewing...YET!..haha
Anyway, my point to telling you all this is in hopes you will take every bit of advantage of this vacation your going to be taking. Spending the time with your sister, and nephew...ENJOY it, LAUGH, SMILE, LOVE, and heck if you have it in you DANCE my friend! (Just don't dance in the airport that might draw securities attention too much! ..haha) OR, Stand on the beach, reach high in the sky, and take the biggest breath you can..INHALE LIFE! You know what I mean my friend...Let it ALL hang out within reason of course! DO what makes YOU happy!
I look forward to hearing from you when you get back! As always, continued prayers my friend, have some fun, take care, and GOd bless.
Annette
That's what I was thinking you had ONE MORE to GO, Thank GOD! Soon you will be looking back at all this and be totally amazed at how strong you are my friend, and having God and keeping the faith can get you through!
Remember when we chatted about how these trials in our lives really puts things into perspective? Makes us look at what is really important in life ect...Life is for LIVING, LOVING, ENJOYING, SMILING, and LAUGHING. I believe these trials are there to remind us of that. (I still have to keep reminding myself of this from time to time, but I'm getting there!) I have a wall plaque on my wall and part of it says "Dance as if no one were watching", well I havent gone to that extreem but, my long road trips back and forth to Mayo clinic brings out an "interesting" outlet! I will crank up my radio and sing to the top of my lungs! Thank God I'm ALONE when I do this, and there are some advantages to being DEAF in ONE EAR, hahaha...but its such a release. I can only imagin what other drivers think when they drive by but I find myself not caring what they do think, I haven't caused any accidents so it seems to be harmless...haha. Now if my boys are in the truck with me I have to "TONE DOWN" a bit, they tend to get embarassed for some reason...hmmm I guess I'm not ready for public viewing...YET!..haha
Anyway, my point to telling you all this is in hopes you will take every bit of advantage of this vacation your going to be taking. Spending the time with your sister, and nephew...ENJOY it, LAUGH, SMILE, LOVE, and heck if you have it in you DANCE my friend! (Just don't dance in the airport that might draw securities attention too much! ..haha) OR, Stand on the beach, reach high in the sky, and take the biggest breath you can..INHALE LIFE! You know what I mean my friend...Let it ALL hang out within reason of course! DO what makes YOU happy!
I look forward to hearing from you when you get back! As always, continued prayers my friend, have some fun, take care, and GOd bless.
Annette
jtomishin
08-04-2008, 09:45 AM
Annette, God bless and thank you for all of that...I intend on doing every thing you mentioned and then some!!! was going to answer you on Friday, but that was our closing day in Accounting here and we were going strong until early evening!!
I will email you next Wed. when I am back!! you take care of yourself...will talk to you soon!! hugs and prayers....J.
I will email you next Wed. when I am back!! you take care of yourself...will talk to you soon!! hugs and prayers....J.
Momof2sons
08-13-2008, 04:55 PM
Janet ,
So glad to hear you had such a good time, you sure needed a break!
I had my CT scan today and it showed some improvement in the nodularity in the resection line with some calcification, which was good. There are two new "micro" nodules one in the right upper lobe and one in the left lower lobe, they are tiny at this point. I have some linear atelectasis(which is areas of collaps)in both lung bases, and a 1 cm adrenal adenoma, and a granuloma on the liver which has been stable. With that report she said I'll see you in a year unless more symptoms arise. I did find a local pulmonologist close to home that will see me so I wont have to travel so far. I seen him this past Monday and he wants me to come back in two weeks so he can go over this reports. He had said to me then that if there was ANYTHING new in there that he would want to do a CT guided biopsy to see if that infection is back, then start me on treatment. I have NO IDEA what he will deside with this report, but will let you know.
I also went to the "pace clinic" so they could check my cardiac implant and that checked out fine. I didnt get to see the cardiologist today. He wants to see me in 2 months. Thats when I will tell him he needs to make a desicion so I can get on with my life. Anyway, I will be heading home tomorrow so will chat soon.
Take care my friend, and as always continued prayers.
God bless.
Annette
So glad to hear you had such a good time, you sure needed a break!
I had my CT scan today and it showed some improvement in the nodularity in the resection line with some calcification, which was good. There are two new "micro" nodules one in the right upper lobe and one in the left lower lobe, they are tiny at this point. I have some linear atelectasis(which is areas of collaps)in both lung bases, and a 1 cm adrenal adenoma, and a granuloma on the liver which has been stable. With that report she said I'll see you in a year unless more symptoms arise. I did find a local pulmonologist close to home that will see me so I wont have to travel so far. I seen him this past Monday and he wants me to come back in two weeks so he can go over this reports. He had said to me then that if there was ANYTHING new in there that he would want to do a CT guided biopsy to see if that infection is back, then start me on treatment. I have NO IDEA what he will deside with this report, but will let you know.
I also went to the "pace clinic" so they could check my cardiac implant and that checked out fine. I didnt get to see the cardiologist today. He wants to see me in 2 months. Thats when I will tell him he needs to make a desicion so I can get on with my life. Anyway, I will be heading home tomorrow so will chat soon.
Take care my friend, and as always continued prayers.
God bless.
Annette
jtomishin
08-14-2008, 09:51 AM
Annette, I was so relieved to read that for the most part you are doing alright...so happy for you and you must be too....just exactly where is the Mayo clinic from where you live anyway??
I am amazed at all that you have been through! As I was reading this email from you, I am wondering how you just keep going with everything you are going through and I realize that it's the faith that has kept you going here, without it, I don't see how you or myself for that fact, could cope with things...
Thank you for letting me know how things went, you are such an extraordinary beautiful person!! You have been through so much already and you always seem so radiant and optimistic!!
I go next week (Wed.) for my last treatment, they ordered blood work this past Tuesday for me to compare with what next weeks bloodwork will be to see the difference in levels as they were concerned with my platelets, but it turns out my platelets are already at a reading that is safe for chemo, and by next week it will probably even be higher, so they said no need to come in for bloodwork on Monday as I usually do, just come in on Wed. for the treatment, so was glad to hear that!!
You keep up the faith Annette, of course I don't have to tell you that!! I will keep you posted as to what is happening with me, as I know you will keep me updated about you...take care, my prayers are always there for you....prayers and hugs....J.
I am amazed at all that you have been through! As I was reading this email from you, I am wondering how you just keep going with everything you are going through and I realize that it's the faith that has kept you going here, without it, I don't see how you or myself for that fact, could cope with things...
Thank you for letting me know how things went, you are such an extraordinary beautiful person!! You have been through so much already and you always seem so radiant and optimistic!!
I go next week (Wed.) for my last treatment, they ordered blood work this past Tuesday for me to compare with what next weeks bloodwork will be to see the difference in levels as they were concerned with my platelets, but it turns out my platelets are already at a reading that is safe for chemo, and by next week it will probably even be higher, so they said no need to come in for bloodwork on Monday as I usually do, just come in on Wed. for the treatment, so was glad to hear that!!
You keep up the faith Annette, of course I don't have to tell you that!! I will keep you posted as to what is happening with me, as I know you will keep me updated about you...take care, my prayers are always there for you....prayers and hugs....J.
Momof2sons
08-14-2008, 06:38 PM
Hi Janet,
Im home now, I drove 300 miles this morning which the first 100 miles were in the rain, NOT fun, but I made it so thats what matters. I go to the Mayo in Jacksonville FL. It's 300 miles east from where I live, so its a 600 mile round trip! With my fatigue issues it can make that drive challenging, so I'm glad I found a local Pulmonologist that is willing to see me. Now I just need to work on that cardiologist over at Mayo to get this over with. I had a long talk with his Nurse, and she agreed with me, saying the fact they have the evidence already, just put a defibulator in so I can get on with my life. I just feel I'm sitting in this "limbo" WAITING...I'm just getting frustrated at this point. If they would just put it in, I wouldn't have to worry if I ever needed surgery in an emergency situation I wouldn't have to fear having a reaction to anesthesia, and being in a facility that could handle it and get me through it. It's all the heart drugs that are toxic to me, so I say, just put that in, and it will eliminate the need for the heart drugs because it would pace my heart during surgery as well. Makes since to ME..haha but who am I?..
Thank GOD this is your last treatment! You have done SO WELL Janet with trying to keep your head up and keeping the faith through all this. I am SO HAPPY you have gotten through this, you are a VERY strong and amazing woman, and truly an inspiration to so many including ME! I will certiantly pray this last treatment will be easy on you and soon you will be feeling so much better, so you can move forward in your life! This chapter in your life will soon be over my friend. It's time to start a new, brighter, and glorious one, If I could reach, I would gladly turn that page for you! God is certiantly smiling down on you!
Take care, stay strong,
and of course continued prayers!
Annette
Im home now, I drove 300 miles this morning which the first 100 miles were in the rain, NOT fun, but I made it so thats what matters. I go to the Mayo in Jacksonville FL. It's 300 miles east from where I live, so its a 600 mile round trip! With my fatigue issues it can make that drive challenging, so I'm glad I found a local Pulmonologist that is willing to see me. Now I just need to work on that cardiologist over at Mayo to get this over with. I had a long talk with his Nurse, and she agreed with me, saying the fact they have the evidence already, just put a defibulator in so I can get on with my life. I just feel I'm sitting in this "limbo" WAITING...I'm just getting frustrated at this point. If they would just put it in, I wouldn't have to worry if I ever needed surgery in an emergency situation I wouldn't have to fear having a reaction to anesthesia, and being in a facility that could handle it and get me through it. It's all the heart drugs that are toxic to me, so I say, just put that in, and it will eliminate the need for the heart drugs because it would pace my heart during surgery as well. Makes since to ME..haha but who am I?..
Thank GOD this is your last treatment! You have done SO WELL Janet with trying to keep your head up and keeping the faith through all this. I am SO HAPPY you have gotten through this, you are a VERY strong and amazing woman, and truly an inspiration to so many including ME! I will certiantly pray this last treatment will be easy on you and soon you will be feeling so much better, so you can move forward in your life! This chapter in your life will soon be over my friend. It's time to start a new, brighter, and glorious one, If I could reach, I would gladly turn that page for you! God is certiantly smiling down on you!
Take care, stay strong,
and of course continued prayers!
Annette
jtomishin
08-15-2008, 10:43 AM
Annette, oh my gosh, you really do have a drive don't you?? wow!! Yes, I can imagine how hard it is on you to do all that driving, that is quite an ordeal you go through! and the rain you had to drive through just adds to the fatigue, doesn't it??
Oh Annette, I can understand your frustration with wanting to go with the defibulator so you can get on with your life...if that made sense with the nurse when you were talking to her, surely, the Dr. could see this, dont you think?? oh, I hope you can make him see the light, (maybe some additional prayers on your behalf will send a "gentle push" from a much "higher" source other than himself) and he will agree to this...when do you see the cardiologist again at Mayo ??
Just remember what was said to me:
"When you're down to Nothing, God is up to Something"....
"Worry looks around, Sorry looks back, Faith looks up".....
Thank you so for the words of encouragement regarding my "last" treatment...you seem to always know just what to say to make me feel better about everything...God bless and and a big hug to you!!
You will continue to be in my prayers and thoughts daily....Janet
Oh Annette, I can understand your frustration with wanting to go with the defibulator so you can get on with your life...if that made sense with the nurse when you were talking to her, surely, the Dr. could see this, dont you think?? oh, I hope you can make him see the light, (maybe some additional prayers on your behalf will send a "gentle push" from a much "higher" source other than himself) and he will agree to this...when do you see the cardiologist again at Mayo ??
Just remember what was said to me:
"When you're down to Nothing, God is up to Something"....
"Worry looks around, Sorry looks back, Faith looks up".....
Thank you so for the words of encouragement regarding my "last" treatment...you seem to always know just what to say to make me feel better about everything...God bless and and a big hug to you!!
You will continue to be in my prayers and thoughts daily....Janet
moderator2
08-27-2008, 03:38 PM
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