Topic: Waiting for things to get better

It's been a very long time since I posted here. I'll be honest, after the initial comfort this site gave me, I couldn't get past the posts of those that had passed away. So I kept my distance. I always seemed to gravitate towards that link, probably indulging in my own self-pity.

But here is an update.
-I'm still stage 4...YAY! (Can I ever go down?)
-I made it to my 28th birthday.
-I had an emergency hip replacement on 9/10 because one of the tumors had eaten away most of my hip and when it shrank, so did the support for my hip. It was either...replace it now...or blow it out and we can reconstruct it later. I opted for the replacement. I'm doing well. I finally ditched the walker last week in favor of one crutch. It suits me just fine and is less cumbersome than that stupid walker.
-I've been taken off of Gem/Cis and put on Oxaliplatin/5FU with horrible new side effects. Cold aversion. Neuropathy in my fingers and mouth. Tunnel vision. Increased painful Neulasta related side effect (I actually just posted a question about it - it causes me to have a fybromyalgia flare up for a few days)
-A new tumor had been found on my back. Its being radiated, and really...for the first time I can say that radiation has helped with the pain.
-My mother-in-law has finally pulled her head out of her a** and realized that I'm dying after making some really inappropriate comments at dinner a few nights ago. In her penance, she has donated her winter bonus to my husband and I for a once in a lifetime trip. We chose a 21 day cruise on the Mediterranean in December. It truly will be my one and only chance to travel with my husband since we always plan for it but can never afford it. Planning this trip has given me new purpose and a desire to stick around for a bit longer.
-Speaking of my husband, he was fired from his job because I cost too much on their health insurance. We hired a lawyer and got a relatively small settlement that includes them paying for COBRA, which is the most important thing. It was kind of a blessing in disguise because now I get to spend so much quality time with him. He's not stressed about work. He drives me to my teaching jobs. Its been really great. We also renewed our vows in August. 5 years we've been married. We wanted to celebrate with our friends and family in case...well...you know.

Ok that's enough. Sorry to take up your time.

Re: Waiting for things to get better

I'm sorry  sad

I have not got much great to say other than this cancer sucks!
My husband is the one with cancer and the ripple effects that it
has caused in our lives in unreal in so many ways.

best wishes to you--enjoy your trip.

My husband is Stage 4 as well, and no there is no going backwards.
Sadly.  I say enjoy "now" and plan for "then".

Really, what other choice do we all have?

This cancer stuff?? It's hard hard hard.
Dorien

Re: Waiting for things to get better

Oh my goodness, don't you EVER think you are taking up our time, we are here for you. I do love the way you are doing things as a loving couple as those Memories will last forever. Sorry to hear about your hip, glad to hear the radiation is helping your hip. This is like "on the other hand" post. You have been through so much. Good for you to win the lawsuit as every bit helps! Also good luck on your fund raiser, Bingo. I never did one before but I would imagine if you can get a Hall donated perhaps from a Church, American Legion or someplace like that, have a fee for the Bingo Cards, Like 5 for $20, have prizes donated  so that you can use all the $$ for donations, and also items donated for a raffle with a price on the raffle tickets. I went to 1 about a year ago and they even had cookies and drinks they sold for a cheap price. Good luck to you on everything going on for you. I am wondering if you ever went for a 2nd opinion on your CC?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Waiting for things to get better

Prayers of healing energies, peace and love to you both.  Yes, cancer can wreck havoc in the lives of such amazing people.  Do live for the moment, because that really is all we have, any of us. 
Fairywings the planned trip sounds wonderful and to have all that quality time with your husband is such a blessings for you and him.  If you ever need a helping hand with getting to an appointment, or would just like to get together and vent with someone who totally understands, please feel free to email me.  I don't live far from Florence and it would be an honor to help out.

Wishing all God's blessings!

Re: Waiting for things to get better

Hi,

I am also Stage IV now, and on Folfox, which after 8 rounds has become increasingly difficult for me. Although not the worst of my side effects, having a numb tongue and teeth is an odd sensation. I understand the strength required in this stage of the disease to put out each fire as it flares up, and then move on. Although I am still working (with reduced responsibilities), as the circles of my life have contracted with the progression of the disease, it becomes emotionally challenging. But you are expanding your circle to encompass the Mediterranean! Fantastic!  I'm so glad you didn't hesitate in accepting the bonus from your mother-in-law. You deserve it, and It's for her own good, what with the penance and all.

I remember when you first posted this summer. You continue to be an inspiration. Thank you for updating us.

All the best, Mark

Re: Waiting for things to get better

Thanks for the update!  Sorry to hear about your hip issues.  It sounds like a wonderful trip you are planning.  Please let us know how it goes.
I am 34 now, diagnosed at 31 and my husband and I have done lots of traveling since I've been diagnosed.  It gives us something to plan, something to look forward to but it is also nice because it is not a long term commitment.

Enjoy your trip and best wishes with your treatment!

Susie

Re: Waiting for things to get better

You have really been through a lot with yours. My husband was diagnosed in May with his CC. I honestly can't tell you the stage because I never really wanted to know. We are currently halfway through Gemzar/Oxipliplatin for his. We do the scan in two weeks to see what progress. He had pretty bad cold sensitivity to the Ox so we understand that. He is currently drinking warm water and wearing gloves everywhere. He's about roasting me out of the house turning the heat up and I am still wearing shorts and t-shirts.
You sound like your in-laws might be related to mine so I feel you pain with that. They have butted in and caused me so much more stress. I can't seem to get it through his mom and sisters' heads that he really is sick. His mom just thinking that he should "just get over it." Then calling him all the time to ask for help doing things he shouldn't be doing. I don't think any of them realize that this will probably kill him.....so she just wants to work him into the ground.

As for the negativity of the website....I did see that a little in the beginning. It seemed depressing but a couple of things I can point  out.
#1 check out the thread of Milestone posted by people. There are plenty out there who are living with this as if a disease no different than diabetes or heart disease

http://www.cholangiocarcinoma.org/punbb … hp?id=8883

#2 Clear back in nursing school I was having a really hard time dealing with being in the nursing home and all the "old people" I only saw as waiting to die. It tore me up. I had a nursing instructor pull me aside and tell me that there is positive in anything all you have to do is look. I know it's hard when you are dealing with something like this but that is what I try to do.

I have also found that by sharing my problems, some have gone before me and have good advice. We can also share our experiences so that others can learn.

Thoughts and prayers going your way.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.