My scans SUCKED!
here's my plan...they did the simulation for rads to the brain...I start the first of 10 treatments on Monday...the mask I must wear is freaky...when they were molding it to my face, I just had to take my mind to another place...but it is a pretty color! Lime green! Both doctors feel very confident this will take care of this as I am totally asymptomatic...no headaches, etc..they did a complete neurological exam...passed...
I also have to have a port sometime next week...any tips on this would be greatly appreciated...this makes me nervous...how did you girls handle that? I told my MO that that I want to be put OUT! lol. ...after the 10 rads I will go back to IV chemo...my MO got me approved for Avastin...I will have this and additional chemo drugs of which he hasn't decided on yet....this will be every 2 weeks...
As a precaution my MO and RO agreed to start me on steroids yesterday...and during rads, no driving...I dislike steroids, but you do what you have to do...and I am now off the Zeloda...I am thankful it worked for 7 months...I knew from the start it wouldn't work for ever...and oral chemo beats IV chemo every time...so again I am grateful for those 7 months that allowed me to carry on as normal...oh and bye bye hair again! Thankfully I still have my wig....I did give away all my scarves and hats...just have to get some new ones.....oh darn, I'll have to go shopping! lol
I am once again digging for strength and courage...I absolutely HATE what this is doing to my husband and grown kids....my heart breaks for them...their world is upside down again....our son is a Psychologist...he is incredibly helpful....Our daughter is a Mommy's girl, at the age of 39 with 3 children of her own....she's taking this really hard...my husband, I know, is tortured by this but hides it fairly well...he is my rock!
So dear pink sisters that's my status...thanks for listening.....also any port tips would be greatly appreciated...I have filled the Rx for the numbing cream....
Hugs to all, Nancy
Comments
-
HATE IT
Oh dear Nancy -- I am sorry about the news. I wasn't expecting this as I'm sure you weren't either. I HATE this c so much...UGH!!!!!!!!!!! I like the word "small and tiny" that you used. It looks like the plan they have for you will work, and I will put you in my prayers so that treatment takes care of it all. Sorry you are going through this. Sorry we are all in this pool. As always, sending you my positive thoughts. I know it's a difficult time for you and your family, but I am feeling positive about the outcome. I pray you always stay positive too. Prayers for Nancy!!
I never had the port so I can't contribute, but from I have heard it's an easy procedure. Other sisters will comment on this.
Wishing you nothing but the very best for your treatments. May you have a sucessful outcome.
Hugs0 -
Sending you a big cyberhug!!!
I wish the news could have been better but it sounds like your doctors have a plan of action and they aren't wasting any time. The general consensus is that ports are wonderful and hopefully you will feel that way once you get used to it. I know you are worried about your family but hopefully they will be okay once they see that you are okay. I'm sorry you have to lose your hair again but try to enjoy shopping for new scarves and hats. Maybe we can take the pink bus out to go shopping with you!
HUGS!!!
Jamie0 -
Oh Nancy, I am so sorry to
Oh Nancy, I am so sorry to hear this news! You sound amazingly upbeat and ready to battle though. Please know that my thoughts and prayers are with you and feel free to pm me if you need anything. (((Hugs)))0 -
Nancy, yes, this news
Nancy, yes, this news sucks!! Your post does sound like there is a plan in place and you are ready to do battle, once again. I had a port put in when I started chemo, again, in August 2011. I am not real keen on being "put out", so I opted to have the port put in without ANY drugs, other then the numbing meds they use. It wasn't bad at all. It happened to be a very busy day at Mayo and I actually walked into the operating room, had the port inserted and then walked out to the recovery area. I didn't have to stay in recovery because I had no meds. I didn't have a port for my first chemo in June 2009 but am glad I have one now. I just finished my 10th treatment yesterday of Abraxane and so far so good.
Probably the worst part of a Stage IV dx is that we are in treatment forever.....the good part, there are a multitude of chemos to keep us here. Good luck to you. I am sending you strength surrounded with a great BIG HUG!!
Debbie0 -
Oh Nancy .....
I hate reading posts like this. But you seem so upbeat and positive. It sounds like there is a good plan in place.
The burning question is >>>>>>>>> do you really like lime green? I hoped that made you laugh.
I am so glad that your family is so strong and 110% with you on your journey.
Keep the faith and keep us informed. Sending prayers and gentle hugs your way.
xxoo
Mary0 -
Oh, Nancy--I didn't want to hear this eitherMyTurnNow said:Nancy, yes, this news
Nancy, yes, this news sucks!! Your post does sound like there is a plan in place and you are ready to do battle, once again. I had a port put in when I started chemo, again, in August 2011. I am not real keen on being "put out", so I opted to have the port put in without ANY drugs, other then the numbing meds they use. It wasn't bad at all. It happened to be a very busy day at Mayo and I actually walked into the operating room, had the port inserted and then walked out to the recovery area. I didn't have to stay in recovery because I had no meds. I didn't have a port for my first chemo in June 2009 but am glad I have one now. I just finished my 10th treatment yesterday of Abraxane and so far so good.
Probably the worst part of a Stage IV dx is that we are in treatment forever.....the good part, there are a multitude of chemos to keep us here. Good luck to you. I am sending you strength surrounded with a great BIG HUG!!
Debbie
About the port--don't worry, it will go well. I had one during the first go-round and it was put in under anesthesia when I was having my re-excision for the lumpectomy. It was removed in the surgeon's office after treatment ended (very easy). Recently, when I was rediagnosed with bone mets, I saw my surgeon and he said if and when I need that port back, he would put it back in under sedation. Apparently, it is a little trickier putting it in than taking it out. I am okay with that--I don't want to be awake and I'm sure you'll be put to sleep for that as well. I hated the thought of a port--but it truly was a Godsend. Made chemo so much easier.
As you know, Nancy, I've just started on this Stage IV journey and in your words, it really does suck. I agree with Debbie--treatment is a constant now. But the good news is--there are still treatment options. This is not what was supposed to happen--but it did. Now we have no choice but to deal with it as best we can. You sound like such a strong fighter to me, Nancy. This current news will take some time to wrap your head around, but after you process, you'll start this fight up again. I'll even loan you my boxing gloves!
Nancy, you have been there for me with inspirational words, prayers and thoughts and I am here for you. I have the watercolor you sent me displayed in a prominent place in my home and it brings me joy and comfort.
Sending you positive energy, courage and many prayers as you embark on this new treatment plan. Please keep us posted.
Warm, huge hugs, Renee0 -
Nancy..MsGebby said:Oh Nancy .....
I hate reading posts like this. But you seem so upbeat and positive. It sounds like there is a good plan in place.
The burning question is >>>>>>>>> do you really like lime green? I hoped that made you laugh.
I am so glad that your family is so strong and 110% with you on your journey.
Keep the faith and keep us informed. Sending prayers and gentle hugs your way.
xxoo
Mary
I am so sorry to read this dear pink sister. You have always been there for me when I first started treatment, it's hard to believe you are having to deal with all this again. First of all Jennifer just finished radiation for brain mets, hopefully she will see this post and be there for you with those questions.
As for the port surgery, I had it done before starting my chemo over a year ago. My port was placed under the skin on my right side and tapped into the vein over there. I was sadated to a point that I don't remember anything but not completely out as I remember hearing conversation. It was a pretty simple procedure but like anything the scare you ahead of time with all the "complications" that could go awry. I'm glad you are doing the port as that definitely was a godsend for me in preventing all those pokes in my elbow vein as my hands have really small veins.
Keep being you sweet sister and remember we are there surrounding you with all our love.
Hugs,
Lorrie0 -
Nancy, I'm so sorry theMsGebby said:Oh Nancy .....
I hate reading posts like this. But you seem so upbeat and positive. It sounds like there is a good plan in place.
The burning question is >>>>>>>>> do you really like lime green? I hoped that made you laugh.
I am so glad that your family is so strong and 110% with you on your journey.
Keep the faith and keep us informed. Sending prayers and gentle hugs your way.
xxoo
Mary
Nancy, I'm so sorry the reports weren't what you were hoping for! But, I'm glad the docs quickly have a plan in place and that you are charging forward in the fight. I'm praying for quick and successful results with a minimum of side effects. I don't have a port, so can't offer anything on that. Sending hugs and prayers.
Angie0 -
UghhhAngieD said:Nancy, I'm so sorry the
Nancy, I'm so sorry the reports weren't what you were hoping for! But, I'm glad the docs quickly have a plan in place and that you are charging forward in the fight. I'm praying for quick and successful results with a minimum of side effects. I don't have a port, so can't offer anything on that. Sending hugs and prayers.
Angie
Nancy, I'm so sorry. I wish I could wave a fairy wand and make it all go away, but since I can't, I'm glad the doctors have a plan. I love your positive attitude!
As far as the port, I had mine put it the same time I had my lumpectomy. It was a little uncomfortable for a week or so, but you get used to it pretty quick. Makes chemo much easier!
You are in my prayers!
Hugs, Debi0 -
Nancy, this sucks. Sorry
Nancy, this sucks. Sorry about the results, not what anyone wants to hear. No matter how old your kids are, it is horrible seeing the pain on their faces when they hear the results. I think the worse part for me is knowing how much my family is hurting and I try not to let them know when I am not doing well because it is so hard on them. Of course, they say they can tell just by looking at me how I am doing.
As far as the port goes, I had no trouble at all. I was so nervous but it was the easiest procedure of all, by far. The MRI is 10x worse for me because I get claustrophobic.
Sounds like they are really on top of it and wasting no time at all with the rads.
Will say prayers, holler if you have any questions that I might be able to answer.
Hugs and Prayers,
Carol0 -
Nancy,camul said:Nancy, this sucks. Sorry
Nancy, this sucks. Sorry about the results, not what anyone wants to hear. No matter how old your kids are, it is horrible seeing the pain on their faces when they hear the results. I think the worse part for me is knowing how much my family is hurting and I try not to let them know when I am not doing well because it is so hard on them. Of course, they say they can tell just by looking at me how I am doing.
As far as the port goes, I had no trouble at all. I was so nervous but it was the easiest procedure of all, by far. The MRI is 10x worse for me because I get claustrophobic.
Sounds like they are really on top of it and wasting no time at all with the rads.
Will say prayers, holler if you have any questions that I might be able to answer.
Hugs and Prayers,
Carol
I will keep you in my
Nancy,
I will keep you in my prayers. Good to hear that they have found these early. Good thoughts and wishes for a good outcome.
Stef0 -
My heart sunk when I readfauxma said:Nancy,
I will keep you in my
Nancy,
I will keep you in my prayers. Good to hear that they have found these early. Good thoughts and wishes for a good outcome.
Stef
My heart sunk when I read the thread. I like the words small and tiny. I also know rads can be so effective on the brain front. chen has her liver mets nondetectable. not to minimize at all. we are here for you.0 -
Nancy my heart, thoughts andcamul said:Nancy, this sucks. Sorry
Nancy, this sucks. Sorry about the results, not what anyone wants to hear. No matter how old your kids are, it is horrible seeing the pain on their faces when they hear the results. I think the worse part for me is knowing how much my family is hurting and I try not to let them know when I am not doing well because it is so hard on them. Of course, they say they can tell just by looking at me how I am doing.
As far as the port goes, I had no trouble at all. I was so nervous but it was the easiest procedure of all, by far. The MRI is 10x worse for me because I get claustrophobic.
Sounds like they are really on top of it and wasting no time at all with the rads.
Will say prayers, holler if you have any questions that I might be able to answer.
Hugs and Prayers,
Carol
Nancy my heart, thoughts and prayers are with you....you are so blessed that you have such a wonderful family....the port is not bad at all don't stress over it you won't even kow you have it....
Tons of hugs
Eva0 -
Oh Nancy. Thinking lots of
Oh Nancy. Thinking lots of curse words right now....
You have been so inspiring, and I have learned so much from you about how to handle this stage IV sh*t. And you're still doing it, even with this news you are positive and sharing jokes.
Here's my port info...The installation itself was done under twilight sedation. Mine is a couple of inches below my collar bone. They did two incisions, one about two inches long for the port. I had internal stitches and steri-strips. The second is less than a half inch, it's above my collar bone at the base of my neck. It was for the tubing that connects to the port. just an internal stitch or two for that. Ask if they can show you a port and the tubing before they install it.
After it was installed, for about two weeks there was some pulling and mild discomfort. I don't feel any of that now. I was given a little book, and a wallet card with the specs of the port.
The port is great for the chemo infusions...the onc nurses are are very practiced with it is much easier than trying to find a vein. I do run into some people in other areas (ER, CT scan techs) who are not as familiar with a port. I've noticed some of them get a little nervous with it. But it must be easy, because I've never had one of them need to poke me twice. It does have a pretty big, pretty stable target instead of a little wiggly squishy vein. I hope this helps ease your mind about the port.
I'm glad you and your docs are on top of things. Please keep us posted on your progress.
Big hugs,
Linda0 -
Nancy sending you a big hugGabe N Abby Mom said:Oh Nancy. Thinking lots of
Oh Nancy. Thinking lots of curse words right now....
You have been so inspiring, and I have learned so much from you about how to handle this stage IV sh*t. And you're still doing it, even with this news you are positive and sharing jokes.
Here's my port info...The installation itself was done under twilight sedation. Mine is a couple of inches below my collar bone. They did two incisions, one about two inches long for the port. I had internal stitches and steri-strips. The second is less than a half inch, it's above my collar bone at the base of my neck. It was for the tubing that connects to the port. just an internal stitch or two for that. Ask if they can show you a port and the tubing before they install it.
After it was installed, for about two weeks there was some pulling and mild discomfort. I don't feel any of that now. I was given a little book, and a wallet card with the specs of the port.
The port is great for the chemo infusions...the onc nurses are are very practiced with it is much easier than trying to find a vein. I do run into some people in other areas (ER, CT scan techs) who are not as familiar with a port. I've noticed some of them get a little nervous with it. But it must be easy, because I've never had one of them need to poke me twice. It does have a pretty big, pretty stable target instead of a little wiggly squishy vein. I hope this helps ease your mind about the port.
I'm glad you and your docs are on top of things. Please keep us posted on your progress.
Big hugs,
Linda
Nancy,
honestly I was hoping and praying that your intuition was wrong and you could see improvement. But of course the patient knows better and I am very sorry for your results. Your positive attitude amazes me and I am sure will lead to your victory against the ****.
Port is a great thing and will protect your vein from torture and can be used in addition to Chemo for blood work and test as well.
Hugs and prayers to you and your family.
New Flower0 -
This news sucksNew Flower said:Nancy sending you a big hug
Nancy,
honestly I was hoping and praying that your intuition was wrong and you could see improvement. But of course the patient knows better and I am very sorry for your results. Your positive attitude amazes me and I am sure will lead to your victory against the ****.
Port is a great thing and will protect your vein from torture and can be used in addition to Chemo for blood work and test as well.
Hugs and prayers to you and your family.
New Flower
Oh Nancy, I'm so sorry to hear this news. My heart sunk when I read this. You are so positive & it sounds like you & your Drs have come up with a good plan of action. My family & I will be praying for you.
As far as the port goes, Linda was right on with her description. I got mine within 4 days of being diagnosed. I was in pain for about a week or so but now I don't feel it all.
Stay strong pink sister & remember that we are all right here with you.
Hugs,
Dawne0 -
So sorry to read about your results
The best thing about the mask is you don't have to wear it very long! I think I counted to 11 Mississippi one angle and 9 Mississippi the second,tiny pause in the middle for machine to move. I found it much easier than my chest radiation when the techs were in for 2 machine changes and it was longer. Plus no need to change clothes, etc. I laughed at the end when they asked me if I wanted the mask, um, NO!
I did need Aquaphor at the end for my scalp and the backs of my ears. That may have been my fault to a degree because I continued to use my regular shampoo as long as I had hair, didn't think about all of those rules we had for skin prep during rads, probably should have done something differently, and since mine all started at Christmas time and regular staff was gone, we may have missed something. But now, not quite a month and 1/2 post trtmt all has been well for a while.
Good luck with everything, I am sure you will be thankful for the port after you have had it a couple of weeks.
Jennifer0 -
So sorry....grams2jc said:So sorry to read about your results
The best thing about the mask is you don't have to wear it very long! I think I counted to 11 Mississippi one angle and 9 Mississippi the second,tiny pause in the middle for machine to move. I found it much easier than my chest radiation when the techs were in for 2 machine changes and it was longer. Plus no need to change clothes, etc. I laughed at the end when they asked me if I wanted the mask, um, NO!
I did need Aquaphor at the end for my scalp and the backs of my ears. That may have been my fault to a degree because I continued to use my regular shampoo as long as I had hair, didn't think about all of those rules we had for skin prep during rads, probably should have done something differently, and since mine all started at Christmas time and regular staff was gone, we may have missed something. But now, not quite a month and 1/2 post trtmt all has been well for a while.
Good luck with everything, I am sure you will be thankful for the port after you have had it a couple of weeks.
Jennifer
I HATE this! It's so not right! It's amazing to me you got right on it and have a plan in place - no down time!
I'm just sorry anyone has to go through this! I'm not sure what I can say other than what a great inspiration you are to all of us - when I had my chemo I didn't have a port so I can't even comment on that.
Keeping you in my prayers and sending you all my positive energy - stay strong and know we are all with you -
much love,
Jenny0 -
Nancy .. I want to just SCREAM ! I can onlyjennytwist said:So sorry....
I HATE this! It's so not right! It's amazing to me you got right on it and have a plan in place - no down time!
I'm just sorry anyone has to go through this! I'm not sure what I can say other than what a great inspiration you are to all of us - when I had my chemo I didn't have a port so I can't even comment on that.
Keeping you in my prayers and sending you all my positive energy - stay strong and know we are all with you -
much love,
Jenny
imagine the pain and anger spewing from your veins. Get mad, stomp around, punch
the doors -- kick the walls -- anything needed to prepare you for your next step
in treatment.
Now, you have your groove back -- focused and prepared for battle!
You are not a wimp! ...You are a WARRIOR, prepared to do whatever it takes
to achieve "NED", and get back you LIFE. You will not give in, or give up!!
Hell have no furry, like a Nancy scorned.
Vicki Sam0
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