Amanda R :) from California - Dx 2009 - RIP March 2015

Those who lost their battle with ASPS :(
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Bonni Hess
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Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R. :)

Post by Bonni Hess »

Hi Amanda,
I am so happy that you were able to schedule the rib resection with Dr. Foshag today and that he is also now planning to remove the four nodules in your right lung during the same procedure. Although I'm saddened that you have to undergo and endure the pain of another major surgical procedure, I share your excitement and joy in knowing that you will be rid of the large rib tumor and suspected right lung mets, and that your tumor load will then be greatly reduced allowing your body and immune system to better fight this monstrous disease. I will be holding VERY tight to Hope that the nodules prove only to be some benign scar tissue rather than ASPS mets, which I know would be one of the best Christmas gifts that you could receive. Take care dear Amanda and try to put all of this in the back of your mind for now as you move forward with the knowledge that soon your body will be free of your rib tumor, and that you will also be able to finally receive a definitive diagnosis for your lung nodules so that you can then make the best treatment decisions. In the meantime, enjoy Living Life, a beautiful November, and a most blessed Thanksgiving with your dear little boy.
With special caring thoughts, happy wishes, and continued Hope,
Bonni
Arch
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Joined: Wed Feb 18, 2009 5:34 am

Re: Amanda R. :)

Post by Arch »

Dear Amanda,

I'm glad that your doctor is going to resect your rib met and your suspected lung mets. All the very best and hope you have a quick recovery.

Arch
Amanda
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Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Surgery date 12/03/09

Post by Amanda »

Greetings Everyone,
Surgery will take place the morning of 12/3 and they will i hope he removing all 4 things found in the right lung. I am not sure if he will be able to see the two 2mm ones though does anyone know if he will be able to?

I am also asking for the profiling to be done an every thing and then i want every thing send to are researcher at the NIH.
Or do they do the profiling there :/ Is there any thing else that i need to ask to be done?

11/29 we will be setting up every thing for the holidays so i can come home to a tree already done and every thing else. I am trying to be positive that i will only have to stay in the hospital the 3 to 5 days that Dr Foshag said it could be. But, i am also trying to be very open to the fact that it may change depending on pain managment and stuff. I did a lot of reading on this forums and others about the importance of the pain managment after the susrgery and seems like every thing that was listed was going to happen per my Dr. He is great :)

I will not lie i am very frightened by the surgery and i am actually very ashamed about this! The others and even children in this forums seem a LOT tuffer then myself *sigh* what a whimp i am! Anyhow, if anyone wants to give me tips pre SX tips on maybe what i will need when i get home or any thing that helped them to have in the hospital i would love it.

On a funny note.. I was talking to Dr Foshag and told him i was worried and thought i may die druuing the surgery. You would have to know him to understand he has a very loving face and is also very funny and looked at me and said "This is what all surgens love ot hear from there paitents" We kept talking and i came to the conclusion of i am in fear of not being in controle of myself. He said that was normal. But, the look on his face when i said that to him. He thought i think that i didnt trust him and i do 100% and i wouldnt let anyone else do this to my body.

In healing hopes for all!

Amanda
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Amanda
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Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Re: Amanda R. :)

Post by Amanda »

Hello Arch :)
thank you!
How is every thing going for you two right now?

In healing hopes for all!

Amanda
Arch wrote:Dear Amanda,
I'm glad that your doctor is going to resect your rib met and your suspected lung mets. All the very best and hope you have a quick recovery.
Arch
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Bonni Hess
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Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R. :)

Post by Bonni Hess »

Dear Amanda,
I am sorry that you are so frightened about your surgery, and my heart breaks to hear that you are feeling "ashamed" of being so scared. You are certainly NOT a "wimp"! You have already courageously endured so much, and it is absolutely normal to be frightened about surgery when you are having to entrust your Life to someone else. I am glad that you were able to be open, honest, and to express your fear to Dr. Foshag, and that he was kind, compassionate, able to provide reassurance for you, and to bring some levity to the conversation to try to put you more at ease. I am glad too that you have complete trust and confidence in him because that is so extremely important. As an experienced thoracic surgeon he will probably inject a numbing medication around the ribs during the surgery to help with post-op pain, and he will also possibly insert an epideral catheter for additional pain control. Both of these measures helped reduce Brittany's post-op pain following her thoracostomy during which the surgeon had to spread her ribs to access the lung mets. This is something which you should discuss with Dr. Foshag pre-op if you haven't already done so. I am grateful that you will have the joy of the Holidays to look forward to as you recover following your surgery, and that you will have the gift of knowing that your rib tumor, and possibly your four lung lesions have been successfully removed. In the meantime, I Hope that you will find comfort and reassurance in knowing that you are going into this surgery having researched and discussed the information you need to be as well informed as possible ( knowledge is power!), and with a doctor who you feel very comfortable with and have great trust in. Take care dear Amanda, enjoy a most beautiful and abundantly blessed Thanksgiving shared together with your dear little son and family, and know that I will be right there with you in my heart, my most caring thoughts, and with my very special prayers on December 3rd.
Heart to heart with special caring thoughts, healing wishes, and continued Hope,
Bonni
Bonni Hess
Senior Member
Posts: 1677
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R. :)

Post by Bonni Hess »

Dear Amanda,
As your December 3rd surgery date rapidly approaches, please know that I am thinking of you with deepest caring and sending my most postive thoughts and best wishes your way for a very successful outcome to your surgery and a full and speedy recovery. I will be anxiously awaiting an update when you have recovered and are able to post an entry on this Board. In the emeantime, please take care and stay strong.
Reaching out across the miles to share gentle hugs, special caring thoughts, warm friendship, healing wishes, and continued Hope,
Bonni
Amanda
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Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Dec 3rd SX update

Post by Amanda »

greetings Everyone :)
To start it is hard to focus on the screen it seems these drugs are messing my vision a lil up but it is worth it to stop the pain!

I hope that the holidays for all of you have been as wonderful as mine have been!

They took the part if the rib out with the tumor in it *8th rib right side* he said he got good margins and was happy and I will go into deeper detail about a few others things that i found to be wonderful in reference to insisions and things like that.. This Dr is amasing!

The things in the lungs were all removed and he also looked for anyting else and he said he couldnt feel a thing!! :)

He said now the aim is NED!

I pray that my wishes of NED will come true!

I wish i was not so out of it right now and i could type to you all more and make more sence! It is so hard i had to stop a minute ago in tears of frustration!

you have all been in my thoughts and I have been trying to read the posts and i have a list of people i want to reply back to asap...

In healing hopes and holiday hugs and CHEERS for the updates of great news i have read!!! :)

Amanda
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Fictional

Re: Amanda R. :)

Post by Fictional »

This is wonderful news, Amanda! Heal quickly and may you have a wonderful holiday season!
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

Up date finaly :)

Post by Amanda »

Happy holidays to all! :)

I have been trying as much as possible to read the forums and from what I am reading there has been wonderful things taking place with in are family of ASPS patents! :)
I have also seen new and awesome patents now posting.. One that is I think eighteen years stable!! YAY!! :)

Ok, onto my surgery and all that is taking place now..

I was in the hospital for seven days starting December third I had part of my 8th rib removed and when they removed it they also went into my right lung and removed the things that were seen in the scans that I now was told stayed stable.

I am now left with *from what we have seen per the scans in the last year* two small things in my left lung the largest remaining 4mm and I have decided that even if they are stable next holiday season I want them removed! The Onc and I talked and he said that maybe we should talk more about a med to keep me stable and I said but I have been stable and so I think that we will remain drug free for the time being. He stated that they are still talking about possible radiation to the site of the rib and unless they state that there is a more then 50% chance of it recurring I will not do the radiation I am worried about my lung ... I would love imput on both of these topics please from everyone :)

My surgery team was amazing and I felt very loved and cared for my everyone I came in contact with even the dog that came to visit me.
Don't know if you have ever had a dog come see you in the room when you are in the hospital but to me hugging that huge fur ball made me feel a lot better :) My son and I are going to be looking into getting a dog and once a week going to the hospitals to see the patents in the cancer wards.

I had about a half foot of stitches running from under my shoulder blade to the lower area below my arm pit. They said that it was very nice to have four months to have the time to get ready for this surgery and I was very happy that they could do some thing called a double incision *I think* it means that they only had to do one incision and not two. I was stable and strong after the surgery also yet i remained in ICU for three days and the last was because i was happy there and i didnt want to leave the nurses they were great! . The problem I had was from the tape and I have scars from it I am allergic to latex. I had huge blisters from it and also lines of itchy areas it sucked! They say that the scars discoloration will go away and I cant wait.

It is now four weeks and my rib area feels almost 80% better except for a few pings of pain and when they hit OMG it is hell but they soon stop. I still about a one inch scab on my rib area and it is healing in my opinion very slow. It is also leaking a lil stuff at night the last few days and that freaked me out a bit. The main problem with pain I am having of from where they put in the chest tube!! Has anyone else been in pain this long from the chest tube site and or does anyone have any tips on how I can feel better I am sick of taking drugs :( My rib cage is sill numb and i do feel it changing a lil but i was told it will take time fo it to be back to normal.

I am on Norco and Advil and Tylenol and gas ex and some thing too so I am not constipated.
I have huge pillows and if anyone has this type of surgery done you will need pillows they help a lot.

I am sorry that I have not posted it has been very hard because this drug though I have cut it down at times really spaces me out. Though it is nice to not hurt I am not sure if not feeling the pain of this tube area is worth feeling like a space cadet!

I will be seeing Dr Foshag on 1/8 and will be posting back more info as i get it.

I hope that the new years brings a cure for all of us and stability and health! I pray that one day we can be a forum of close friends that have been thru hell together and can celibrate life with out ASPS instead of fight this desease! I am blessed to have you all in my life and you have made a very tuff year easier for me and I am very thankful with al of my heart!

In healing hopes and hugs!

Amanda
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Bonni Hess
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Posts: 1677
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R. :)

Post by Bonni Hess »

Dear Amanda,
Welcome back to the Board :-), and thank you for your detailed update and all of the shared information. I am so sorry that you are suffering so much post-op pain :-(, and am Hoping that it will resolve very soon as your body recovers and heals from this major surgery. Following Brittany's two VATS surgeries and her RFA related pneumothorax she experienced severe pain from her chest tube, and even once the chest tube was removed there was residual stabbing pain which would occur occassionally with movement or even just taking a deep breath. It seems to take longer for the nerves in the rib area to heal than in other parts of the body, so until the pain is mostly gone, I think that it is best to continue taking some pain meds and to limit doing any physical activity which might cause any further stress or irritation to the rib area like heavy lifting. I am so grateful that your remaining two lung mets appear to have been stable for the past year which is very encouraging. On this basis I understand your reluctance to begin a systemic treatment as long as you have regular scans to monitor disease progression because it is important to remember that lung met growth, or lack of it, is unfortunately not always an accurate predictor of metastasis to other parts of the body as we heartbreakingly learned when Brittany had lung met stability, but developed mets in her liver and brain. If your rib met was encapsulated, as most ASPS mets are, I am unsure of the benefit of post-op radiation to the rib area unless there is a concern that the tumor may have invaded other areas adjacent to the rib that was resected, and there are remaining tumor cells which were not removed. I will be anxiously awaiting your update following your January 8th meeting with Dr. Foshag. In the meantime, please take care dear Amanda, feel better each day, and enjoy a MOST happy, healthy, and Hope filled New Year.
Reaching out to embrace you with VERY gentle hugs, healing wishes, special caring thoughts, and continued Hope,
Bonni
JordanneG
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Location: Olympia, WA

Re: Amanda R. :)

Post by JordanneG »

Amanda,

I'm happy to hear everything is going well for you as of now. I know how rough these surgeries can get :( I hope you continue to get better and that your appointment tomorrow is positive! I have a pug and he is really my best friend :) I just wanted to give you a little input if you're dog search goes on. Pugs are great with all people and live kids! My little guy loves anyone and anything he comes into contact with :) good luck on the dog search and the appointment!

Jordanne
Amanda
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Location: Los Angeles, Ca

Re: Amanda R. :)

Post by Amanda »

Hello Jordan :)
I will look into a pug! I love them a lot! Do they snore? lol I think it is so darn cute when dogs do that. I also like the freancg bull dogs they look like ET, lol

I will post puppy updates when they start to happen and things are plugging along here trying to get healthy again and yes surgerys suck but they remove the evil cancer so it is all worth it <3

In healing hopes for all!

Amanda
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

1/8 appt with Onc...

Post by Amanda »

Greetings Everyone!
I saw Dr Foshag and he said no radiation to the rib site!! yay! I was very glad to hear that, lol
We also talked about the possibility of some trial drug and we both decided that because so far i have not in a year had any new sites and also stability we will wait and see with the new base line scans being done soon read.

I want to warn anyone that is going to be going thru this type of surgery the time in healing is very difficuly emotionaly at least for myself and a few others i know :(
Please, if you are going to have a rib resection post to me or e mail me at AmandaVWA@aol.com and be on a drug like Ativan pre surgery please for two reasons one the worrie and the other even if you are not feeling scarred you will be tence and this will cause more pain. The two differenct types of surgerys together are for myself tuff and i have two times now pushed myself into re injuring the rib area :(

In a few days i wil be postong a pre op list for anyone that will be entering for this type of surery must have list if things that will help even if a lil bit to get paitents thru this!

My prayers are that the scans i will be having will show still no growth in the left two lil mm things in my left lung and not a thing found in the pelvic thru brain scans. I am so worried *sigh* I dont know why it has been a year so i should try and remember that! But i have no trust in this dam ASPS because its evil is different in every body it invades!

My new years pyarers are we will have a cure this year and for all of us to be happy and healthy in this new year!
This prayer is also for the ASPS paitents that i know are reading yet not posting ;)
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Amanda
Senior Member
Posts: 825
Joined: Mon Feb 02, 2009 2:02 pm
Location: Los Angeles, Ca

a song that i love and wanted to share :)

Post by Amanda »

Hello :)
I wanted to share a song that i love that has a lot of meaning to me and the lyrics are very close to how I an others i have met that have cancer feel I hope you like it also :)

It is by India Arie

"Beautiful"

The time is right I'm gonna pack my bags
And take that journey down the road
Cause over the mountain I see the bright sun shinning
And I want to live inside the glow
Yeah

I wanna go to place where I am nothing and everything
That exists between here and nowhere
I wanna got to a place where time has no consequence oh yeah
The sky opens to my prayers

I wanna go to beautiful, beautiful, beautiful,

Please understand that it's not that I don't care
But right know these walls are closing in on me
I love you more than I love life itself

But I need to find a place were I can breathe
I can breathe
I wanna go to place were I can hold the intangible
And let go of the pain with all my might

I wanna go to a place where I am suspended in ecstasy
Some where between dark and light
Where wrong becomes right

I wanna go to beautiful, beautiful, beautiful,

In healing hopes!

Amanda
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Bonni Hess
Senior Member
Posts: 1677
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Amanda R. :)

Post by Bonni Hess »

Dear Amanda,
Thank you for your faithful update and for the very helpful shared advice and information for any patients who may be facing a rib tumor resection. Shared anecdotal treatment information is invaluable for everyone who is fighting this challenging disease, and I continue to strongly encourage everyone who visits this Board to please actively participate in sharing information, anonymously if desired. I am so grateful that you will not require post op radiation to the resected rib area, as this should allow more rapid healing and recovery for you without the negative side effects of radiation. I agree with Dr. Foshag and you that It seems to be a good decision to postpone a systemic treatment until you have baseline scans to try to determine if there is any disease progression or growth of the remaining two unidentified lesions in your left lung. My most positive thoughts and best wishes are with you for very good scan results which show continued disease stability with no new tumors and and no growth of the two lesions, and I will be anxiously awaiting your next update. In the meantime, please take care, give your body time to heal and be careful with doing any activity that can cause additional pain or injury to your resected rib area, stay strong and positive, and know that you are in my special thoughts and prayers. Thank you again for all of your thoughtful sharing.
With warm hugs, special caring, and continued Hope,
Bonni
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