Aa
OT Good News about Cancer
I finally got to see the Dr. who did my surgery in May. I had not seen him since before surgery on May 5th. I finally got to find out the specifics of my cancer. What he got and what he left. I was told by other Doctors I had clear cell which is a bad form of cancer that does not respond to treatment and is deadly. Apparently what I was not told is most of the tumors were not clear cell only 10%. That is a big difference in outcome. So I was thinking I was 100% clear cell. I never thought to ask about percentage. I am holding on until Tuesday and hope Duke will take over my care. This Doctor was not going to see me for six months after my surgery. Who does surgery and does not talk to the patient afterwards for six months? If I had not demanded to see him I would still think I had little chance of beating this thing until our appointment in the Fall. I am so glad it is a better outcome. I am so sick on chemo and it is easier if you know you have a good chance. My husband had never met the guy. He said it would have so much easier if we had had this explained to us in May.
Alex
Alex
Thinking of you and keeping you in my prayers. Sending calming vibes to that digestive tract of yours.
(((Hugs)))
Ren
(((Hugs)))
Ren
I hope you feel better soon, you are so strong and my prayers and thoughts are with you.
Hugs
wobbly
Hugs
wobbly
Thanks for the support. The chemo is really kicking my rear this time. My husband is off on a 12 hour bike ride. As soon as he left I started violently throwing up. It is good he got away. He stayed home yesterday. It does not help him to have to be with me all the time when he feels so helpless. A friend from my local MS group who has been through Cancer is coming by. Polly is clinging to every step I make.
Knowing you all are out there makes this easier. I hope most of you will never experience MS and Cancer. The two together make it harder.
Alex
Knowing you all are out there makes this easier. I hope most of you will never experience MS and Cancer. The two together make it harder.
Alex
Alex I second Jibby - you truly are an inspiration - your positive attitude helps others so much -
It is so good to hear that the cancer isn't as aggressive as first thought - and Duke has to take you on as a patient. I'm with Lulu - I will become a Blue Devil fan for sure! and Iive here in Terrapin territory!
Have a good weekend and keep us posted
Tracy
It is so good to hear that the cancer isn't as aggressive as first thought - and Duke has to take you on as a patient. I'm with Lulu - I will become a Blue Devil fan for sure! and Iive here in Terrapin territory!
Have a good weekend and keep us posted
Tracy
Hi alex,
I am so glad to hear your news! You ae an amazing person. I sometimes re-read your posts to get inspired! You are a fighter!!!! and such a poitive person through all of this!!!
Thinking of you!
Jibs
I am so glad to hear your news! You ae an amazing person. I sometimes re-read your posts to get inspired! You are a fighter!!!! and such a poitive person through all of this!!!
Thinking of you!
Jibs
Alex, I am going to focus on the good. What a BLESSING! This is SUCH good news. Keep healing and getting stronger. Some times it's one second, one minute...at a time... until you realize, "WOW I feel SO good and am smiling again.: YOU.can.do.it. :)
here's my deal, Alex - if Duke cancer takes you on as a patient, I will root for the Blue Devils basketball team for one season. For someone living in this part of the country, that's almost unheard of :-)
Basketball or not, they just have to take you in, You need a safe home team to call the plays.
Basketball or not, they just have to take you in, You need a safe home team to call the plays.
Good things do happen, keep a positive attitude the best you can.
I hope you keep getting GREAT NEWS..
take care
JB
I hope you keep getting GREAT NEWS..
take care
JB
Alex, Well there is some good news but I hope and pray you will get into Duke soon. just shaking my head at all i read.
Great news about your cancer Alex, but not so good how they are not taking care of you. I will be sending my best wishes and prayers so you will get in Duke. You deserve all the best dear Alex.
(((hugs)))
Dagun
(((hugs)))
Dagun
I am with Audrey on this one. I pray and hope that they will take you on too. We will all be praying, and that force will be heard, so relax if you can, and enjoy your life, and the good news that you just got.
That is great, and you must be relieved somewhat anyways, huh??
(((HUGSSS)))
to you,
Candy\
That is great, and you must be relieved somewhat anyways, huh??
(((HUGSSS)))
to you,
Candy\
The prayers have been there all along. Now they will specifically be for you to get intoDuke before UNC does you in. The good Lord is going to get tired of hearing the name Duke.
We've got you covered Alex!
Big Hugs and lots of
prayers for Duke,
Ren
We've got you covered Alex!
Big Hugs and lots of
prayers for Duke,
Ren
I am sending my prayers, to the unknown force existence, that you get into Duke ASAP.
Audrey,
I apologized to the Nurses but one nurse could not let it go. all through my chemo this time she talked about me to her patient the "Christian Lady" from July 3rd, and the other nurses. My nurse, the Clinic Manager, even told her to she was being unprofessional when she walked in on the tirade, but the nurse only waited for her to leave the room. I said nothing about any of it. So I am trying to have calmer chemo but this nurse goes on and on and on like child. I could not believe it. I guess my nurse, the nurse manager, got a talking to for not have me come in with a Neutropenic Fever so she is ignoring me all together. It is like a nightmare. I essentially have no health care team. I am praying Duke will take me.
A friend of mine took her friend to chemo with the Duke doctor I am scheduled to see and says he is great. Really compassionate. He had an office visit with this lady before each chemo session.
It turns out my Doctor at UNC did not even know what medications I was on this whole time. He handed me an outdated and incorrect list and told me to correct it. They had me listed as taking two drugs I am allergic to. Both I was given scripts for when I left the hospital but I never filled them because I can't take them. They have to know every drug even OTC with these chemo drugs due to interactions.
Also my Doctor asked about Neuropathy symptoms from the chemo drugs. I said I can't tell I have MS and already have all the symptoms in my hands and feet and do not know if it is caused by MS or Chemo or if it is worse. He looked at me like I was stupid. This is the same Doctor who said he did not need to talk to my MS Specialist about MS and Chemo. He now realizes he did not do a baseline Neurological exam and has no clue as to how to tell if the chemo is making my neuropathy worse.
Of course the Doctor did not examine me at all. He examined me on May 5th. He just talked to me Tuesday. I have Asthma, MS and Cancer, and am Neutropenic and no one ever examines me.
Pray for me I get into Duke. I am not kidding about prayer, positive vibes or whatever. I need them.
I feel like i am in a Monty Python Skit only it is not funny.
My MS Specialist is at Duke so hopefully if I get in the Cancer Clinic they will talk to the MS Clinic. They could at least know what my baseline is.
Alex
I apologized to the Nurses but one nurse could not let it go. all through my chemo this time she talked about me to her patient the "Christian Lady" from July 3rd, and the other nurses. My nurse, the Clinic Manager, even told her to she was being unprofessional when she walked in on the tirade, but the nurse only waited for her to leave the room. I said nothing about any of it. So I am trying to have calmer chemo but this nurse goes on and on and on like child. I could not believe it. I guess my nurse, the nurse manager, got a talking to for not have me come in with a Neutropenic Fever so she is ignoring me all together. It is like a nightmare. I essentially have no health care team. I am praying Duke will take me.
A friend of mine took her friend to chemo with the Duke doctor I am scheduled to see and says he is great. Really compassionate. He had an office visit with this lady before each chemo session.
It turns out my Doctor at UNC did not even know what medications I was on this whole time. He handed me an outdated and incorrect list and told me to correct it. They had me listed as taking two drugs I am allergic to. Both I was given scripts for when I left the hospital but I never filled them because I can't take them. They have to know every drug even OTC with these chemo drugs due to interactions.
Also my Doctor asked about Neuropathy symptoms from the chemo drugs. I said I can't tell I have MS and already have all the symptoms in my hands and feet and do not know if it is caused by MS or Chemo or if it is worse. He looked at me like I was stupid. This is the same Doctor who said he did not need to talk to my MS Specialist about MS and Chemo. He now realizes he did not do a baseline Neurological exam and has no clue as to how to tell if the chemo is making my neuropathy worse.
Of course the Doctor did not examine me at all. He examined me on May 5th. He just talked to me Tuesday. I have Asthma, MS and Cancer, and am Neutropenic and no one ever examines me.
Pray for me I get into Duke. I am not kidding about prayer, positive vibes or whatever. I need them.
I feel like i am in a Monty Python Skit only it is not funny.
My MS Specialist is at Duke so hopefully if I get in the Cancer Clinic they will talk to the MS Clinic. They could at least know what my baseline is.
Alex
Alex, That is good news! Big Hugs! Yay!
Keep fighting girl!
Doctors make me so angry the way they lack in communication with patients. It is so important that we have every bit of hope they can give us. Why can't they see this? Have they never been a patient themselves?
Keep fighting girl!
Doctors make me so angry the way they lack in communication with patients. It is so important that we have every bit of hope they can give us. Why can't they see this? Have they never been a patient themselves?
Wow, that is some good news, Alex! I'm really glad for you. Sounds like you are in very good hands now.
Ditto on th Like button!!!
I am so happy that Duke is finally giving you the care and trestment you deserve!
Keep fighting!
(((hugs)))
Deb
I am so happy that Duke is finally giving you the care and trestment you deserve!
Keep fighting!
(((hugs)))
Deb
Hubby's cardiologist wanted him to come in a week after his stent. He calls the office and they don't have an appointment for four weeks. Seems like it's typical across the board!
I can't believe they didn't give you more information - that's just crazy! I'm so glad that the prognosis is better... keeping my fingers crossed...
I can't believe they didn't give you more information - that's just crazy! I'm so glad that the prognosis is better... keeping my fingers crossed...
I wish we had a like button here because I would definitely like everything that
Audrey has written - she is right on all counts.
This is such good news. You are right that it is easier to endure the hell of chemo if you believe there is a chance that it will make a difference. Now, keep fighting to move to Duke. You deserve so much better treatment than you have received.
Audrey has written - she is right on all counts.
This is such good news. You are right that it is easier to endure the hell of chemo if you believe there is a chance that it will make a difference. Now, keep fighting to move to Duke. You deserve so much better treatment than you have received.
Alex:
I'm so glad to hear that you got some better news. Hopefully it will put your mind more at ease so that you can focus your energy into beating this cancer.
Duke has a great reputation for treating your cancer, so I hope you get in there, especially in light of your current treatment.
Friends of mine who have had cancer received well coordinated and compassionate care. It sounds like you are getting anything but that. I cannot fathom waiting for six months to meet with the surgeon, especially with something like cancer. It also disturbed me greatly when you shared your experience with the proselytizer during chemo. I was shocked by the nurses responses to you! Way, way way out of line.
You are such an incredible woman who has given so much to so many. You deserve nothing but the best, including your medical care.
Livestrong!
(((Audrey)))
I'm so glad to hear that you got some better news. Hopefully it will put your mind more at ease so that you can focus your energy into beating this cancer.
Duke has a great reputation for treating your cancer, so I hope you get in there, especially in light of your current treatment.
Friends of mine who have had cancer received well coordinated and compassionate care. It sounds like you are getting anything but that. I cannot fathom waiting for six months to meet with the surgeon, especially with something like cancer. It also disturbed me greatly when you shared your experience with the proselytizer during chemo. I was shocked by the nurses responses to you! Way, way way out of line.
You are such an incredible woman who has given so much to so many. You deserve nothing but the best, including your medical care.
Livestrong!
(((Audrey)))
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