Topic: Intro to Me

Good morning all,

I have been reading this forum for a few months now and have truly appreciated everyone's information. It has helped me quite a bit.  I was diagnosed with intra-hepatic cholangiocarcinoma on 12/29/06.  My wonderful husband and I had gone to Florida for a cruise last November and I was feeling terrible. We ended up getting off the ship before it even left dock and I spent 4 days in the Broward General Medical Center (instead of on the Carribean!!!) for what they believed to be cardiac related issues. While there, they ran an ultrasound thinking maybe it was my gallbladder.  Well, in the long run, it actually WAS my gallbladder, but they also found a mass in my liver, and my heart is fine (thank goodness). They did a CT scan but decided it was a hemangioma. After getting back home and seeing a cariologist, a gastro-enterologist, having many CT scans and MRI's and two liver biopsies (the first was a liver biopsy only, the second was for the liver tumor only), I was finally diagnosed on 12/29/06. Happy new year!!

My wonderful sister-in-law works with a family doctor and the two of them had taken over as my advocates to get all of this testing done. The GI had an MRCP done, and ended up sending me straight to a surgeon to have my gallbladder out. He had dropped it...as far as he was concerned, that was my problem. My SIL's doc pushed for the second liver biopsy only three weeks after the first and it was finally diagnosed. She is that one who had to call me to give me the news.  As hard as it was for me to hear it, I can't imagine how hard it was for her to tell me.

Thru her dotor, I was referred to IU Med Center here in Indianapolis and I found the perfect doctor. She is a gastroenterologist/oncologist/surgeon and specializes in the liver. Can you imagine??? 

Now, I am not stupid, and I am pretty computer savvy. I had done my research and knew the background on CC. And I was scared...to...death. I was dying.  I'm 49, and I was dying...until the moment she walked into the room that day and immediately told us she could take it out.  WHAT???  She had handed me back my life, at least for a while.

Surgery was 01/29/07 at IU. Only 4 weeks from diagnosis.  It felt like 4 years.  But I never hesitated, I knew I had to do it. And trust me, it wasn't easy.  I had a right hepatic lobectomy and a cholesystectomy (gallbaldder removal) and was in the hospital for 9 days. I was home for 9 days and then back in for 4 days, for dehydration, nauseau and diahrrea, but have been getting steadily stonger and other than that old familiar abdominal pain, I probably feel better than I have in years.

I went back to work at 3 1/2 months.   I did work part time for 3 weeks while I finished up physical therapy, but have been going strong ever since (ok, with a few naps every now and then).  I did not have any chemo.  I sit in front of a computer all day, and the soreness in my abdomen can get pretty bad. They say it's normal. I have to believe them.

Sorry that this is so long, but here's the real reason for my post:  I am still scared. My husband, God love him, would do anything he could to make this all better.  He has been so strong and has been with me every single step of the way. But, I don't think he understand how much this is on my mind. All day, some days. I try so hard to live in the "One day at a time" mode, but some days it is so overwhelming. I have a wonderful prognosis according to my doctor, the best you can have...it was found fairly early (the tumor was already 5.7 cm, so it wasn't REAL early) but she was able to get clear margins (sorta). The part that really scares me is that the tumor had already grown to the edge of my liver, so all those little cells were free to make a break for it and run off to hide somewhere else.  I know my way around a computer and the web, and I read so much about clear margins and recurrence.  I keep waiting for the other shoe to drop.

I had my first follow up CT scan on 06/08/07 and it looked good. My labs looked "okay" too. 

Thanks so much for reading this and listening. I pray for anyone and everyone who has had to peruse this website. It's not for entertainment value. If you are here reading this, you need to be here, and I am so sorry for that.  Good luck to everyone, including me and I wish us all a long healthy future.

Thanks,
scragots

Today is a new day. Congratulations, you are already a survivor!

Re: Intro to Me

Scragots,

I know what you're going through everyday.  Working, worrying about the pains, and just hoping that everything holds together.  I go through this everyday as well. It does help to know that we are here for each other and it does help to share and to be able to tell someone how we feel.

G

Re: Intro to Me

Scragots,
Sounds like the cruise could have been more fun.... that just gives you a reason to take another one wink.

I see from your post that you had your surgery at IU hospital.  My mom had her surgery there also.  Do you live in Indiana?  We live in Mooresville, Indiana.  They say that IU hospital is a wonderful hospital to have this sort of surgery.  Not every hospital has the capacity to do such an in depth surgery.  Mom's surgeon told her that this is the biggest operation that there is.  She had her surgery on November 1, 2006.

I know that my mom thinks a lot about what is next.  She went through chemo and radiation and met so many people who had been through chemo and radiation before for all varities of cancer.  It made her think about the fact that she might have to be back there sometime.  I try and reassure her that she didn't get to meet all of the people who haven't had to come back, because they were cured the first time.  I know that is easy for me to say, because I am a bystander.  I think that now I probably think about cancer more than she does.  Cancer hasn't been a major concern in our family, but now it certainly is.

Sounds like you have a wonderful supportive husband.  I am so sorry that you have had to go through this.  Big hugs to you.

Amy

Re: Intro to Me

Scragots,
I think you are me... we have the same timeline for diagnosis and surgery as well as the whole "clean margins" and no chemo and a return trip to the hospital. I too have been told I have the best results one can hope for, but like you I am just waiting for something bad. I am so scared at times it overwhelms me. Like you I have a husband that does not comprehend the depth of fear that can overtake me at the most random of times. I have seen a psychologist about everything and that has been wonderful and really puts things in perspective. She told me to jut stop. I am to

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Intro to Me

Thank you all so much for your emails and words of wisdom.  I do appreciate everything you have told me and I want you to know that it has really made me think over the last day or two.

glightfoot:  It definitely helps to know that others understand what I am saying. I am very lucky to have the husband and family that I do, but unless you have actually been diagnosed with cancer, or are extremely close to someone who has, I just do not believe it is possible to understand how deeply this affects you.  There are still days when I say to myself "I have cancer? I mean, I HAD cancer?  WHat? ME???"  It just seems like it must be happening to someone else.

amylea:  Yes, we live in Indiana, just north of Indy. We are so lucky to live near such an amazing medical center with exactly the right doctors to take care of us. I love my doctor. She is a real smartie, coming from Cornell, Sloan-Kettering and Northwest Presbyterian and has a wonderful sense of humor and a great sense of optimism.  I am sorry your mom and you and your family are having to deal with this nasty disease and I will add you both to my prayers.  I don't believe that I have a single relative who has been diagnosed with cancer, which makes THIS diagnosis that much more, mmmm...disheartening, I guess.

devoncat:  Thank you, thank you, thank, your words meant so much to me. You are so right...if I only had 3 months to live, I need to spend it living, not waiting to die.  I know I spend a lot of time researching this disease, hoping to find some kind of answer.  I work with numbers all day and I want facts and figures.  I want to know...what are the odds of recurrence?  Will I die of this disease? Will the docs be able to help me next time? And on and on and on...  I haven't found any reliable answers yet, and of course, I won't.  At least, not answers that make me happy. This whole thing is up to God and life and the only thing I can do is try to enjoy it while I have it.  OK, I talk BIG, but I am going to try hard to make that effort, full well knowing that it ain't gonna be easy every day.

We are leaving town for the weekend just to get away.  We are only driving to Louisville which is about two hours away, but we are going to tour some of the mansions in town and then we are going to take a dinner cruise on the river!  So romantic!  smile

And, I am making my hubby plan a real vacation in September. You know, a week away from home when you see the sights, eat good food and relax as much as possible. At least, I think that's what a vacation is for.  wink There must be a better way to vacation than to spend it in a hospital!!!  It'll be after my next MRI and hopefully we will be celebrating.

Thank you all for being here to listen to my long-winded whining. You have no idea how much I appreciate the understanding and the kind words.

Thanks,
Sue

Today is a new day. Congratulations, you are already a survivor!

Re: Intro to Me

No problems Sue. It is a worrying and tiring time in all our lives. i am the biggest worrier and whiner. It does make you feel guilty because we are lucky right now to be cancer free and there are so many here that are really fighting a good, hard, intense no hold barrel fight. But the fear of it coming back (and statistically it does) is really difficult to contain (though I do my best!)

I believe in vacations and spending time with family right now too. I currently live in Sweden and I just got married a week ago so all my family were here. I pressured my sister to travel with me because I feel fine now and who knows what the future will bring. We need to spend time together now and not wait. So we are off in the morning for a 2 week tour of Poland. It is important to me to have this time with her when I am feeling well and if things take a nose dive, then at least we did this together. So go on those trips and have those dinner cruises!!! Life is for Life.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Intro to Me

I have been catching up on this site after being away for a while.  Your situation sounds a lot like my wife, Kathleen's.   She was diagnosed when she was young (40), had two resections at Mayo Clinic, has been on a number of chemo regimens and most recently had Therasphere treatment.  She is going to start a new chemo drug, sorafenib, in the next few days and is not looking foward to it.  One thing that has changed for her in the past year is the addition of hepatocellular cancer along with cholangiocarcinoma.  A mixed-type tumor which makes an unusual situation even more rare. 

Kathleen recently made it past the 5 year anniversary of her cancer diagnosis.  She has been a success story and I can honestly say that most of the past 5 years she has been able to lead a fairly "normal" life.  One thing that upset her was having to quit her job (where she worked 20 years) but we're happy to have her around more as a mom and wife.

Just like cancer affects everyone differently physically I believe people handle it uniquely also.  We both read Lance Armstrong's book and we really liked a book called Dancing in Limbo.  Kathleen and I have seen a counselor together a few times who we really like and helps us with some of the rough times.  The fact she has many cancer patients is really valuable. 

Another thing Kathleen has going for her is a GREAT relationship with her Mpls physician.  That is so important and in fact she switched doctors at Mayo Clinic because she wanted a different type of doctor-patient relationship.

Sorry for rambling on here but so many of your experiences and comments remind me of Kathleen.  There is hope and every patient and situation is unique so don't focus too much on the numbers.  I know that's easier said than done and Kathleen still asks about it at every appointment.   

I hope this helps and I know Kathleen wanted to find people in her situation when she was diagnosed 5 years ago.  She has a link to a carepages.com web-site under the "wiki" button above.  Her patient name is "kathleenmfoley". 

Good luck!

Re: Intro to Me

Scragots,
Been thinking about you and our close schedule....
HAve you had your scan yet? I have been a little worried as I have not seen you post recently. Hope you are doing well. Best of luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Intro to Me

Hi Kris,

Wow

Today is a new day. Congratulations, you are already a survivor!

Re: Intro to Me

Okay, I really do believe we share the same karma now. It sounds like you have had the worst luck over the last couple of days, which must have taken an emotional toll. Stuff like that always happens to me. My friends and I laugh over it because we think things like that only happen to me. One of my friends said I would rather have bad luck than Kris's luck! Imagine...

So...Best of "luck" tomorrow!!!! and an extra prayer for you tonight.
You do sound like you have a wonderful doctor. Hopefully you will get a good nights sleep so you will be mentally strong enough for the whole scanning business. I know we both sometimes get a little mentally and emotionally tired with this and no one can really explain the ride you start once diagnosed with cc. I will think very good thoughts for you about the pain. I was having similar pains and nothing appeared in the scan and doctor said that my nerve endings were healing and they were just a little confused and sending any old message they wanted that had little to do with anything that was going on in my body. Hopefuly it is the same with you.

Thanks for the congrats on the wedding. It was such a whirlwind. Dr. thought I might get on the transplant list so I couldnt get back to sunny Carolina for the planned wedding and we just throw a wedding together in 3 weeks. Luckily my parents and sister had the time and money to fly over to Sweden and be with me. It was overall just too emotional, but it was really good for my family to see that I have a support system here to help me deal with the hand I have been given. Yes, I am ready for 2008 and a group of friends and I are planning on a New Years skiing trip to celebrate life and the new year (though I cant ski and they are planning REAL Alpine skiing so although the cancer hasnt wiped me out yet, enjoying life still might!)

Best of luck Sue. Please let us know when you can. It seems funny but I think of you as like my "cancer buddy" given all out similarities and I will worry if too much time passes without notice. It seems silly, I know but that is the way it is. Will be thinking about you.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Intro to Me

Kris,

New Years sounds great!  So, are you actually from the states?  I was an Army brat and have traveled extensively, but have never been to Sweden. I can

Today is a new day. Congratulations, you are already a survivor!

Re: Intro to Me

Good luck for tomorrow Sue xxxxxx