Topic: Almost ran into Kris from Sweden today in Chapel Hill, NC

Hey Kris, I can't believe it.  Charlie had an appt. with Dr. Sanoff at 12:30 today.  For some reason, I kept thinking about you a lot and come to find out, you were in the room right next to ours and Dr. Sanoff came from your room to ours.  I told Dr. Sanoff about mentioning her name to you and she said she would be surprised if we hadn't passed in the hall and had just come from your room.  I heard you laughing.  I told Dr. Sanoff you have a great sense of humor.  She said you were a sweetheart.  I hope you liked her and got the information you needed.  Maybe Dr. Sanoff will become a cc expert...Wishing you all the best.

Carol

Re: Almost ran into Kris from Sweden today in Chapel Hill, NC

HOW FUNNY!!!!
Dr. Sanoff is great, though of course she gave me news I didnt really want to hear. She too thinks it is back and my best outcome would be for more surgery, but it might be too difficult to perform because of its placement and that I already had so much of my liver taken out the first time. So surgery moght not be an option. What I found interesting was that she said surgery in Sweden would be as good if not better than in the states since they (like the UK) have specialised centers for such things and so therefore the doctors are more experienced with this type of surgery.

My mom said I made Dr. Sanoff blush when she told me that surgery was my best if not only hope for long term survival and I told her that was not good enough. I am looking for more than long term survival and I intend on having more than that. To which my dad said I was always contrary. smile

The meeting was both soul destroying and good. My parents went with me and this is the first time they have heard things come directly from the doctor. They need a little time (as do I) to absorb the fact that statistically I will die sooner than I would like. But Dr. Sanoff and I talked about why I was not given chemo or radiation in Sweden (that stupid statistics thing) and that she would have given it to me if I was in the states. That was hard to hear and I will forever wonder if it would have come back if I had treatment after my first surgery instead of staying in Sweden with my husband. The good news is that she explained that I am entitled to Medicare which I did not think I was and that radiation, chemo, and surgery are covered with it. I am going to fill out the paperwork today.  Dr. Sanoff said that I could have my surgery in Sweden and if no after treatment was offered to come back to her and we would work out some radiation and possible chemo for me with medicare.

That information was the most important to me. I have had this horrible fear about the progression of this disease. I never wanted to make the decision to stop treatment in Sweden to come back to the US to die. Now, I know that I can have treatment in the US and I will never have to decide to give up just so I can come back home. I can not explain how important that was for me to find out.

Thanks Carol for passing along Dr. Sanoff's details to me. I , like you, trust her and appreciate her dedication. This community is amazing and I owe so much to it, and I never would have found out about Dr. Sanoff and medicare without your help. Thanks again.

I will be back in Sweden on Monday where I will begin pushing for surgery and radiation/chemo. Dr, Sanoff said it needs to be done in a month. One more Christmas for me in the hospital--have any of you had Christmas dinner in the hospital? Not good.

Other things I found out from my visit-1)my original tumor was T2, not T1 like I thought. And I am 5'5'' not 5'7'' like I have always believed. So not only did I find out the cancer is back, but I am short to boot.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Almost ran into Kris from Sweden today in Chapel Hill, NC

My, arent I ego-centric?!?!?!
Just realised I did not even ask about how your Charlie and his visit went. Sorry, I really only believe the world revolves around me sometimes, not all the time!

I hope your meeting was as informative as mine, though I little happier. I wish I would have known about you being there, I would have waiting around.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Almost ran into Kris from Sweden today in Chapel Hill, NC

Charlie is doing well, although I had been worried about his energy, his color, really everything. Dr. Sanoff reassured us or me that was normal after the surgery.  He will improve.  It may take 6 months or longer for him to return to feeling like he did before he got sick.  She wants him to come back every 3 months for an MRI.  As of now, she thinks he has no cancer that anyone is aware of.  That being said, we talked about the line between reality and hope.  We can't just sit around waiting for the cancer to pop up again as I'm sure so many people here have learned.  He is still very tired, but we're so thankful he's passed his 6 month mark they gave him to start with and he'll be with us longer.  We'll be meeting with Dr. Blackstock at Baptist here in W-S who she recommended to get more information about radiation treatment.  She said Charlie's margins were clear after surgery, which was very good.  There's not enough data available for her to say she would recommend radiation after surgery or not.  If Charlie does have radiation, he can get it done closer to home as it will be every day for a while.  Again, we'll have to find out as much as we can and try to make the decision that will work for him.  Please share your thoughts on radiation after surgery if anyone can. 

Kris, I'm glad you had a good meeting with Dr. Sanoff.  Good for you telling her you want more than long term survival.  Seems like we fight, fight, fight all the time.  I told every doctor we ever met that 6 months was unacceptable and we were going to get more.  I'm glad you found out about Medicare too and coming back to the US if you need to for treatment. 

You and your family continue to be in my prayers for your upcoming surgery.  Keep us posted.  Have a safe trip back to Sweden.  Are you parents having a hard time with all the information Dr. Sanoff gave you? 

Carol

Re: Almost ran into Kris from Sweden today in Chapel Hill, NC

Carol,
You have such wonderful news!!! I hope you posted it in the Good News section to brighten everyones day. There is a terrible line between hioe and reality like you said.  I am more doom and reality where my family and husband live in hope. I too live in hope, but seem a little more practical and understand what the possibilities are. However, I will continue to fight and dig my heels in. I have also not given up completely on having children. So the 2 year cancer free clock has to start again, ok that is the way it is. I will be talking to my doctor about freezing some embryos so I can have them waiting after chemo and the 2 year wait is up.  Yet, I am also cleaning up stuff from my old bedroom at my parents house so if the worse comes to worse, they dont have to deal with it. It is amazing what I have kept!

I find it funny you use the term unacceptible-I use that all the time and it makes me feel like a parent lecturing their children about behavor. I have told everyone there are two outcomes for me and one is unacceptible so I must have the other one. So fight, fight, fight I must. I am quite good at that and stubburn as well. Plus, I can laugh my way through most things so I am going to do it. My parents are very upset, but this was their first dose of reality so it is expected. My mom is taking today and tommorrow off work to spend time with me. When I said not to worry I promise I wont croak in the next couple of days, she didnt find it too funny-but I did.

Kirs

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

6 (edited by JeffG Thu, 29 Nov 2007 12:45:42)

Re: Almost ran into Kris from Sweden today in Chapel Hill, NC

Hi Kris,  Get your boxing gloves on shorty! Hee!  Sorry I couldn't resist.  I have complete confidence this is a fight you can win.  Advocate big time for what you feel is right and need done.  If not, Dr. Sanoff has your back covered.  Also, just so you know my sister and husband live in Cary, N.C. just down the road from Chapel Hill.  A Truely caring and professional couple who would without a doubt offer temporary accomodations if ever needed. Plenty of room.  All I have to do is threaton to run over her with my bicycle again. Ha!  How is Hans dealing with all the news?  He sounds like a very supportive Hubby.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

7 (edited by marions Tue, 08 Jan 2008 09:27:41)

Re: Almost ran into Kris from Sweden today in Chapel Hill, NC

Dear Kris,
I don't put much value in to the statistics, and even if I did, I would focus on the fact, that someone has to be in the top 10% of the equation.
This might very well be redundant to say, but you are taking back with you to Sweden all medical records, right?
Fight and hope, the two things most intertwined, will lead to success.
Have a save flight back to Sweden.
Oh, and by the way, I would love to have that other inch in order to be 5

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER