Lainy, I wish I had half the "gut 101" training that you have, and the love that you have in your marriage.  Thank you for your words of encouragement, now and always.

Linda

Thanks all for your support.  I mentioned cholangitis to both my PCP and the Mayo Dr., but by PCP didn't really know what to do, and the Mayo Dr. said just to take pain meds.  I mentioned a blockage also and he said if you get a blockage, you will turn jaundice and then the drs. can deal with it then. 

I know he couldn't treat me (my referral didn't allow him to), but when I asked if I should have it checked out, he didn't offer any positive opinions on that.  That's what I was dissappointed about also.  Now I need to go to another oncologist and get his opinion about further treatment on this point, not to mention I'm not ready just to wait until major things start to happen.

As far as my husband goes, he really only likes to get involved if things go well.  And if it appears that it might be difficult for him in some way, he wants out.  Sometimes I feel that I should have listened to my family long ago, and divorced my husband.  Then maybe I would have someone else more caring in my life who would want to take care of Kevin when I'm gone.  Jim just thinks of all the negatives and rarely of anything to do with anyone else.  He has his own issues and dwells on them more often than anything else.

Linda

Well, I

4

(18 replies, posted in General Discussion)

Kris,

I was so happy to read that you are home!  It truly is the small things that makes us happy.  Just having OUR things around us; husband, couch, your own pillow, kitties!; makes things seem a lot better.

My best to you and Hans, as well as my prayers. 

There are a few people on this Board that I draw strength from, one very special one is you.  Keep up the good spirit....your work is not done here yet.  Enjoy being home.

Many, many hugs from across the miles,
Linda

5

(19 replies, posted in General Discussion)

Lainy,

I want to tell you how much you have impacted my life on this board, and I just can't find the special words to do that for such a special lady.  Everything that others have said are true, and more.  You life me up when I get to having the pity party for myself, that I feel I just can't stop going on.  You are the most courageous person I've met, and to have such love that you and Teddy have, makes you both so blessed. 

I wish for your continued blessing in everything that comes your way, as well as for all of us on the Board for having known you.  You certainly are like my family.  Keep on keeping on.  My very best prayers and wishes for you and T to go as far as you can.  I'm so glad that T got to go to the golf awards with the Shriners. 

My love to both of you.

Linda

Lainy, just checking in and saw your post.  Thanks for the advice.  It is very good and something I had not thought of at all.  This is a small theater and the tickets were not very much at all, so I would think my brother would not mind not going especially if I told him why.  Thanks again.  After a long ride too, it does sound better to just relax.  I'll be a little nervous anyway, so why not enjoy the quiet instead.

Kathy B. - about not taking Ibuprofen....none of my drs. ever mentioned not taking specific meds, only that Tylenol affected your liver and Ibuprofen is hard on your stomach.  Did the Mayo drs. say why Ibuprofen would be bad to take?  Maybe all the more reason why I am seeking new drs.

Thanks all,

Linda

Well, I've been away for quite some time, just grabbing a quick look and post here and there and trying to keep up.

I had success getting my referral to Mayo Clinic after all, but my medical group would only authorized 1 visit with 1 oncologist.  When I told Mayo that, they said that was fine and asked that I have updated CT's and bloodwork done locally.  That was a snap.

Then I had to get copies of all my medical records, CT scans, results, and biopsy slides.  I finally finished that yesterday.  Just in time.  My appointment is scheduled for 7 am on Tuesday (Nov 9) morning.

My brother decided to drive me there (such a sweetheart) so that my husband Jim could take care of our son and make sure he got off to day care and school.  Seeing that my brother and Jim don't get along very well, that is a big step for both of them.  My brother to offer and Jim to agree.  Kevin thinks it is great!  A chance to be just with Daddy and do "guy" things without Mommy around for a couple days (I'm more the disciplinarian).

My brother being the type of person who is always thinking about what else we can do to take up time, suggested a Bon Jovi concert that is in Racine, WI Monday night.  This is a small venue and only one night.  We plan on driving most of the way and seeing the concert, then driving on to Rochester, MN after.  I hope it doesn't tire me out too much.

My Univ of Chicago Onc sent me a letter that said "the patient and I agreed" that it would be good to move her to symptomatic care and it would be completely reasonable".  So he more or less will do nothing further unless I get some symptoms of CC again, which by the way have come back.  My problem with that is that I don't want to go back to him, and since I have the appt. with Mayo, I want to wait to see what they say first.

The CT's done for Mayo mentioned a small area of fluid build-up that they thought was NOT ascites, but was unsure what it was exactly.  And all the other tumors have grown again in 2 months, and grown new ones.  That was 3 weeks ago.

Now I have a slight cough, I have lost about 20 pounds in 3 months (which for me is a good thing, but not a good way to do it).  I have pain in my right side, which gets worse if I seem to be on my feet a long time, or "overdo" it.  Then Halloween night I started with a fever that reached 101 before I finally took Ibuprofen which brought it down.  I went to work on Monday, and saw my PCP.  He thought the fever was the cancer doing something and since my upcoming appt. at Mayo, he didn't want to do anything.  He said my lungs were clear (I didn't have much, if any, of the cough then either) and the pain was only minor when I took a deep breath.

I stayed home from work on Tues with the fever going up and down when I took meds, now switching to Tylenol so it wouldn't upset my stomach.  Partly the reason for weight loss is that I don't have a desire to eat.  Nothing appeals to me and when I eat more than a small amount, I feel nauseated, so I haven't been eating much unless I force myself to eat small amounts. 

I fell asleep on the couch and was woken up with a 101.4 F fever again.  Again more Tylenol which broke the fever, but I woke up with the bed and all my clothes soaking wet.  My PCP finally gave in and gave me an antibiotic to take expecting that maybe if I had an infection, it would knock it out.  The cough has become a little worse, and now the pain at night is sometimes unbearable depending how I sleep.  I can't walk straight up without holding onto my side, and I still occasionally get a fever, now taking Tylenol if it gets to 100.  I've taken 3 days of antibiotics so far and have 2 days left (Arithromycin - Z pack).  Also due to the weight loss, my blood pressure was 104 / 68.  Very low for me, so the PCP cut my blood press. meds down to only 10 mg.  He wouldn't take me off completely yet for fear something else could happen because of it.  The low BP was making me listless and run-down feeling (not to mention not getting enough nutrition).  I also drink a Carnation Instant Breakfast every morning too.  That still tastes good to me.

Wish me good luck at Mayo and on our trip up there on Monday.  I'm hoping for some good news from them or at least a treatment plan instead of just waiting.

Linda

8

(14 replies, posted in Members' Cafe)

Lainy,

Thanks for the info.  Doesn't it seem odd that his medical clinic does not treat CC?  I can understand it being a cancer clinic, but I would think they would also include treating the disease that took Walter from them.

Linda

9

(14 replies, posted in Members' Cafe)

I thought Walter Payton died of Bile Duct Cancer too.  I met him once a long time ago.  I'm a secretary at a police dept and he owned a restaurant in the town and needed to be fingerprinted for the state liquor license requirements along with a Cleveland Browns player that he co-owned it with.

Well, needless to say, word got around the dept and Village Hall that he would be coming in and a lot of people bought his posters and asked him to sign them and pose for pictures.  He was SO gracious and accommodating to all of us.  Probably just why he was nicknamed "Sweetness".  He was really nice.  I still have a picture of him and me that's really nice.  I look almost like a kid it was so long ago.

Linda

10

(15 replies, posted in Members' Cafe)

Wonderful pictures Gavin.  I really enjoyed seeing them.  It would be nice to "get to know" others through their pictures.  Thanks for sharing.  It brought lots of smiles.

Linda

11

(2 replies, posted in Thought for the Day)

Yes, very beautiful indeed.  Thank you so much for sharing.

Linda

Lainy,

I am so sorry for your newest situation.  You are a tremendous rock for T and help with things involving the rest of us on this board as well with such knowledge and respect.  I hope to give some of that back to you as well.

I just wanted to also add my prayers and good wishes to you.  It would be really nice for us all to meet someday, but over the miles will have to do for now.  Lots of hugs and memories to you and Teddy.

Linda

13

(21 replies, posted in General Discussion)

Kris,

I have been off the board for a while with my own difficulties, but every time I see a post from you it lifts me up.  You are so strong and courageous that when I hear of how you are handling your CC, I feel lifted up and that I can handle what is thrown at me in a better frame of mind.

I am so glad that you had your sister with you, and that you have a wonderful oncologist to care for you and your wishes and needs.  You seem to be truly blessed in those areas, and especially with Hans too.

I'm sending you so many hugs and prayers over the miles in hopes that there will be something that can be done to continue your fight for a long time.  Sharing your positive attitude, I know all of us can deal better with what we have to deal with too.  Thank you for your giving, and I hope that you can get a little bit back of what you have given to us.

Stay strong,

Prayers to you, Linda

14

(14 replies, posted in Members' Cafe)

It is really a great idea Margaret, and I hope that her "team' listens a little more this time.  Maybe since it's her last season.  Keep us posted.  I'm in the Chicago area too and would be will to join in.

Linda

Thanks Ironbark,
I agree, we are all a big family, worldwide.  I don't know what I would have done without this board for its knowledge and support.

Hang in there, and keep coming back.  We all should, for each other!

Linda

16

(11 replies, posted in Good News / What's Working)

Moontje,

Great news on 3 years for Tom and you.  Heres to many continuing years as well.  Thanks for the great update.

Linda

17

(16 replies, posted in General Discussion)

Lainy,
Good news on both fronts.  Glad to hear you are good to go for 4 years now!  And glad that T is getting some better sleep.  There are a few people on this board that have grabbed my heart, partly because I have been "with them" longer than some recent postees, but also because of the strength that you all show in fighting this illness.  Whether it's the person who has CC or a caregiver, the resolve and courage to so many others that comes through in your posts is amazing.  You and Teddy are in my heart always.

Here's hoping for more showers for "cute" Teddy.

Linda

18

(37 replies, posted in General Discussion)

Kris,
Just wanted to say you are always in my thoughts and prayers.  You are such an awesome woman with your strength and courage for what is literally thrown at you, but you manage to get through it.  You are my inspiration and others as well I'm sure. 

Here's hoping that the doctors will find out what is not working and fix it again.  They came up with this plan, so why not have another soon?  Love to you and your family from across the miles.

Linda

I agree SO much with all that is said here.  Just the other day, someone had a TV on in our office lunchroom and a co-worker who's mother had breast cancer and was cured was sitting there.  A news program came on about breast cancer funding and research and I got furious.  My co-worker spoke up and I explained that it was so wrong that my cancer is so rare that little is given to fund research for it (or other lesser known cancers), but that breast cancer is known everywhere and their campaigns are everywhere, that it seems to be "fashionable" to donate to the Susan B. Komen foundation.  My co-worker started to say that so many get breast cancer, and because it is so curable now, that it helps when people are made aware of that.  I said then all the more reason why people should donate to a CANCER fund that all cancers can benefit from and make people aware of ALL CANCER detection so that others can be helped more through research and get "more curable" results.  He backed down and agreed.  End of discussion.

Thanks Lisa for bringing this up.  It was good to vent.  By the way, haven't there been a few well-known athletes or actors, etc. that had CC?  I know Walter Payton had liver cancer, but didn't know if it was CC or just liver disease.

Linda

20

(28 replies, posted in General Discussion)

Dianne,
Sorry I've been "away" from the board for a while and as many know it takes a long time to get caught up on everything.

I had surgery Apr 09, with clear margins around surgery and lymph nodes.  I DID have lymph node involvement however.  My surgeon told me "they usually don't do chemo in this type of cancer".  His words!  I met with an Onc. who recommended chemo "as a precaution" as to "better say that we did rather than to wish that we had" kind of thing.  My first CTs were cancer free....the next set showed metastasis and return of tumors.  I didn't see the Radiation oncologist until after the metastasis showed up, and then HE asked ME "why wasn't radiation done after surgery?" 

After gaining much knowledge on this board, I have learned to ask tons of questions and do everything that you can and that is available, as the onc. more-or-less, better safe than sorry.  Even though he didn't go far enough in his thinking for me.

Good luck, and keep posting your progress.  I will be going to Mayo Rochester soon too.  I look forward to a new opinion.

Linda

Val,

I absolutely was laughing out loud at your posts.  I LOVE your sense of humor.  Especially with this CC that is the only way to handle it.  Thank you for coming back to the board as we can always, always use more sense of humor to lighten things up.

AND drinking the bile sounds VERY bizarre.  I wonder how they "discovered" that this could be an option?  My father's family was from England (my Dad being the first one born in the US), and we enjoyed Monty Python and Benny Hill quite often.

Take care and hope your future days are less busy!

Linda

Isisman,

I just have to vent myself here.  Although my heart sincerely goes out to you and your husband, I can't help but feel resentment in your posts.  You say you love your husband so much and want him not to suffer, but yet maybe the one thing that could help make him better, you don't even consider.  Wouldn't it be terrible if you found out that he was suffering from something yet undetected that was easily correctible?  I have a relative that has fibro-myalgia that is not being controlled with pain meds, and she suffers each day.  No, not in the extreme pain that your husband is in, but she doesn't give up and has sought many other opinions.

It just doesn't add up that most things seem to be checking out ok except for the nodes, and the extreme pain.  That is why so many people on this board are trying to help you with their opinions....and most to get second or third opinions.  They feel for you as do I, and the pain you both are going through.  If this was happening to me or a member of my family, I would feel my doctors don't really know what's going on, and find someone who might have a window into the problem. 

You say your husband can't travel, but he seems to be doing little things around the home, and walking 2 miles a day!  I can't even do that!  And what's to say that you would have to travel a great distance?  His pain is making his blood pressure go out of whack, but it will not kill him.  Something else will, but it may take quite some time.  I hear that you want his pain to stop, but in getting another opinion, isn't there a chance of that?

I wish you all the best, and do hope you both get comfort soon in all that you are working on.

Linda

23

(14 replies, posted in General Discussion)

Harmony,

I feel the hug near Chicago too!  What a wonderful post.  Thank you, thank you. 

Take care.

Linda

24

(17 replies, posted in General Discussion)

Kevin,

I'm very sorry for your loss of Kristin.  What a touching way to say goodbye to her by scattering her ashes in a Wisconsin lake.  I remember many of Kristin's posts and she will be missed by many.  I wish there was something more that I could say, but just take peace in your memories of her and all that she meant to a lot of people.  "You are never really gone if you live in the hearts of those you leave behind".

Peace be with you, and come back often for any support that you may need.

Take care,

Linda

25

(80 replies, posted in General Discussion)

Rick,

Congratulations on the good news of your post.  I have had Gemzar / Cisplatin combo. and did pretty good on it.  I can't say that either one of them were more difficult than the other because they were at the same time.  I absolutely didn't like Oxaliplatin due to the cold sensitivities.  Here's hoping that the Gem/Cis DOES help with the new growth and the ascites problem. 

Also, I wish a wonderful vacation for you and your lovely wife.  Bring back many, many memories and photos!  A vacation sounds wonderful right now.  I will be heading for Mayo Clinic in the next couple of weeks too, so I hope that they will be able to help me out like they have you.

Prayers for a safe, memorable journey to Atlantis and back!

Linda