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It's good news but I am not feeling it....

MJay's picture
MJay
Posts: 132
Joined: Aug 2004

Hi All~ Went to two drs appt last week. The plastic surgeon cut me loose. RE: my vaginal reconstruction "They don't look much better than that!" I'll have to take his word for it. I nearly fell off the table laughing when he then said he wanted to get a picture of it. I sure hope it isn't for his wall or an album where future patients pick out their new look (you know like how they do with breast and nose jobs). Too funny. It was so they could have a base in case anything changes over the years. Thank goodness it wasn't for an album or wall portrait.

I then went to my radiologist and he gave me very good news. At least it sounds like very good news but I want to know why I am not jumping up and down.

He said he basically considers me cured at this point. There is NED and we have taken such an aggressive approach to the cancer that at this point he is labeling me cured. Of course I will still be going through the standard monitoring of every three months etc.

I asked what date does the medical profession use as the "anniversary" date of "cure". Specifically when should I be celebrating 1 year,2 years, 5 years cancer free etc? He said they use the date of the first treatment. Since my first course of treatment was radiation it would be the first day of radiation.

Does that sound right to everyone?? I assumed it would've been after surgery where they got clean margins and considered me NED or at my first clear cat scan.

Anyway... oddly, I wasn't jumping up and down at the news he departed. I think I have been through so much that I don't trust that it will all be easier from hear on out. It has been one helluva year and I can't believe it is pretty much over (as much as cancer can be over).

So... let me know when I can celebrate.

MJay

rejoyous
Posts: 259
Joined: Nov 2004

Hi MJay,

I totally relate to your sense that despite the good news you can't quite take it in. Earlier this week, when I went for my first post-chemo c-t scan meeting and got an NED report, my husband was ecstatic. I was frozen. I think I was so geared up to accept and deal with ANY news, it was hard to just drop the battle mode and celebrate. Besides, in my case there's another C-T scan around the corner, and another, and another, etc. I found myself thinking, of course I'm cancer free right now, I just got out of chemo. Those microscopic cells are probably just waiting for the all clear to come out and party.

But with every passing hour I'm feeling more ready to accept this as really good news. I was thinking, when a baby is born healthy, we don't think, "yeah, but they could discover a heart murmur tomorrow." We just celebrate and get on with living.

Gettting my chemo port taken out today was also a big step. I can't quite face throwing out that expensive zofran, but this weekend I want to decancer my medicine cabinet, put away the medical records, etc. I think making these material changes will also help drive the reality home.

Meanwhile, I'll celebrate anyone on this site who uses the word "cured." YAAAHOOO!!!!!! CONGRATULATIONS!!! Here's to you, you brave survivor!

rejoyous
Posts: 259
Joined: Nov 2004

Hi MJay,

I totally relate to your sense that despite the good news you can't quite take it in. Earlier this week, when I went for my first post-chemo c-t scan meeting and got an NED report, my husband was ecstatic. I was frozen. I think I was so geared up to accept and deal with ANY news, it was hard to just drop the battle mode and celebrate. Besides, in my case there's another C-T scan around the corner, and another, and another, etc. I found myself thinking, of course I'm cancer free right now, I just got out of chemo. Those microscopic cells are probably just waiting for the all clear to come out and party.

But with every passing hour I'm feeling more ready to accept this as really good news. I was thinking, when a baby is born healthy, we don't think, "yeah, but they could discover a heart murmur tomorrow." We just celebrate and get on with living.

Gettting my chemo port taken out today was also a big step. I can't quite face throwing out that expensive zofran, but this weekend I want to decancer my medicine cabinet, put away the medical records, etc. I think making these material changes will also help drive the reality home.

Meanwhile, I'll celebrate anyone on this site who uses the word "cured." YAAAHOOO!!!!!! CONGRATULATIONS!!! Here's to you, you brave survivor!

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

Firstly, well done! It is all great news!

But I have read a few posts on this board that talk about the lack of excitement and relief when told they are NED and I can relate to it as a caregiver. The first time my husband was given the all clear, I was elated. He however, said it is always in the back of his mind and he will never be able to relax again. The second time he was given the all clear, I also got caught up in this feeling that "Why do we have to go through this every three months?" I was actually feeling quite angry...luckily it was only temporary and I was soon able to enjoy the good news. I think it is quite normal....you have been through so much that it all suddenly catches up with you. While you are in treatment, you are in fighting mode and suddenly the exhaustion sets in.

I always feel that we must enjoy the day we are living in and not think too much of the future. I am more and more convinced that when our time is up, it is up and there is nothing we can do about it. Now, I do not mean that we should not do everything we can to keep ourselves well, but when you look at it, it seems that age, health, personality etc have very little to do with our survival. I know of someone who died yesterday, colon cancer, very fit lady, spiritual,52 years old, doing so well after surgery, yet suddenly died.

Enjoy the day, celebrate life while we have it....that is all we can do....and above all, I feel it is important not to harbour grudges, revengeful thoughts, negative feelings towards anyone.

Best of luck!

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi,

Congratulations on your excellent reports. I say celebrate today. None of us know what tomorrow will bring so why not enjoy the moment!
Helping others cope with their diagnosis and current struggles keeps me thankful that I'm strong enough to do so.

Keep us posted on your progress!

Kay

RunnerZ
Posts: 185
Joined: Feb 2004

MJay...Been there...felt that (well, not the rebuilt vagina...but the feelings of indifference regarding the early reports of NED). However, you will treasure them as they build up over the years. I have...for more than 6 years now after a year long battle with rectal cancer. As for the date you start counting on...my oncologist said the shortly before surgery since the preoperative chemoradiation knocked all the cancer cells down even before surgery. However, I always kept a running count from 1. Diagnosis 2. First treatment and 3> Date of surgery. Use your Dr.'s recommendation...it sounds good to me...and he's been through this thing a time or two. I am glad your year of pain is over....start to enjoy the rebuilding of your life...and rebuild it exactly as you want it. I changed my life in many ways, including moving out of the east coast megalopolis (NYC) and back to my much more rural routes. My family and I have never regretted the change. Now just get ready to win that Tour De France!

slammer
Posts: 120
Joined: May 2004

Hi There, Well said by everyone! I agree totally, the nervousnes& apprehension sems so normal to me. I too get good reports from Ongologist but till I se the proof Ya know! and I have 3 months to go,,,but I am strong, and waiting, hopeful chemo does it's stuff!, all is good please remenber that,, God bless & hang in there, oh gotta go tooth hurts
Best to you!
Love Amy

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hi MJay. Ditto to the above. I am 1 year in rem. and still get the jitters every 2 months, always the week before my tests or scans. I guess the worry never really leaves us but I have really, really changed my atittude to each day. I don't worry so much about trivial things and try to get on with the real meaningfull things in life. Keep up the good attitude MJay.....and if things get a little down think of that picture your doc has tucked away. Have a chuckle about it...use it to brighten your day!
.....maybe your doc. is into soft core porn MJay...awwww..just kiddin!
Did I put a smile on ya face??? I hope this didn't offend you MJay.....it's kangas way of saying....look at tha brighter side sweetie..you are NED!!!!!Congratulations!!
luv n huggs, kanga n Jen

jana11
Posts: 708
Joined: May 2004

MJay,

We have a lot in common, except that I am stage 4 (sigh).
I am SOOOO HAPPY FOR YOU. I completely understand how you feel. And, I have been there. Had the post section of vagina rebuilt, my plastic surgeon also made jokes about how healthy the graff looks. :)

After my first NED report I remained calm...no celebration. My husband and friends threw a "chemo sucks" party and made me wear a crown as chemo queen.
Six months later, they found a lung met. (bigger sigh) I didn't fall apart when it was found. My oncologist thought I was crazy. I simply was ready for bad news, so it didn't surprise me.

Again, my last NED report. I was sooooo relieved, and happy; but I was also felt like I was in a bad mood that night. My hubbie and I even got into a stupid arguement, quickly resolved. I think the stress from the rollercoaster takes an enormous toll. I took Steve's advice and had some cocktails...started to relax.

I don't tell you this to scare you - you will NOT get mets. I'm a special case. Just to let you know - we are all there. You have to ease into good news when you live bad news for so many months. All part of the adjustment.

May OUR NED last!!!! Basically, every feeling, emotion, thought is normal for cancer survivors! Personally, my husband and I are planning lots of trips during my time until the next scan. CARPE DIEM.

take care, jana

johnom's picture
johnom
Posts: 86
Joined: Jul 2004

Dear MJay,
I think this particular discussion thread is fascinating and exactly why I like to stay tuned into the semi-colons. I couldn't agree with your feelings or empathize with them any more! I actually went around asking doctors why I didn't feel more relief? Why, when my family was hugging me and congratulating me did I feel...well,..nothing?
I was told over and over that (l) after an anesthesia such as we have to get this colon surgery they are finding this very common for several months or even up to a year; (2) the mind has adopted defense mechanisms for more bad news that no one will guarantee us we will never hear; (3) we have become used to suppressing our hope during treatments as we are surrounded by very ill people, and it is difficult to believe and let go. ( I was admitted to the hospital for "pain management" after the radiation absolutely fried me raw and I was bleeding though my pants. For a brief period of time I was in a room with a man my age who was succumbing to prostate cancer. He was a marvelous person, but hearing him plan his funeral and having him tell me he was "ready" took an extraordinary toll on my feelings of bon vivant and aspirations for a long future for a long time.)
Everyone's advice is so perfectly appropriate. My onc says I am "FOD" which is free of disease...I guess he isn't into the NED terminology or maybe he's on to the next catch phrase. Whatever, it is good news to hear it said, and like so many others of us I have started a newer, happier life that looks at every single day as a blessing. What's in the back of my mind is the memory of my hospital roommate who did expire that week. He had six fentanyl patches on his body when he was admitted and was hurting badly. I may be where he was someday, but I will be there knowing I took the message I received in 2004 and made the very best of every second.
Like you, I'm not jumping up and down, but I am smiling a lot more, and gradually, very slowly, letting myself believe. I took the pressure off of myself to be in a hurry. That's for everyone else.
Cancer is so very personal isnt' it?

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