Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret, that was a really good report! I am so glad you and Tom have finally had some down time from your kick'in. Everyone needs some time to rest. I would sure want you kick'in for me in my corner!

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: My Husband and Cholangiocarcinoma - Part 2

Margaret, thank you so much for keeping updates going....it gives me a lot of hope.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

Glad to hear things have settled down for you two for a while.  Sounds like you have everything under control for now.   Hoping it stays this way for a while.  You both deserve a break.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,  So glad to hear that Tom is doing so much better after his rough couple of weeks. We sure on a roller coaster ride aren't we! Make sure you are eating all those good foods and getting rest yourself. Hugs to both of you.
Nancy

Loving my husband from afar.

130 (edited by mlepp0416 Sun, 13 Mar 2011 04:03:21)

Re: My Husband and Cholangiocarcinoma - Part 2

Three Years ago...when Tom was diagnosed with Cholangiocarcinoma.  My how time flies!

And even though in most cases it appears that this cancer means that one's life may be cut short, it can also mean that life has a whole new meaning and that one begins to appreciate life in a whole new manner.

Everything takes on a new perspective for the person who has been given those words "You have cancer"...(and for that persons family) whether it be Cholangiocarcinoma or any other type of cancer.  Some cancer is worse than others, but some cancer's can be 'cured'  and others cannot.

So with a cancer such as Cholangiocarcinoma entering one's life your life's path changes.  The person you thought you were going to spend the rest of your life with may not be there with you into your 'golden' years.  The person you rely on the most suddenly becomes the person who relies on you!  You find yourself doing all the things that he once did and more because your life changes based on his needs.

You sometimes have to find the joy in the little things in life, things that really didn't seem to matter before the cancer diagnosis!  But things that now have taken on a whole new meaning.

In some ways I'm grateful for Cholangiocarcinoma because it has given me the chance to express my love for Tom in ways that I never thought were possible.  Just by being there for him, giving him moral support, standing by him when people that he thought were his friends are no longer here.  Family that he thought would stand by him through thick and thin no longer come around.  (Is it that they are uncomfortable with how he looks now? Are they afraid that they might catch his cancer?)

I'm grateful that I've had the last three years rather than to have him taken suddenly from me with no warning (although sometimes I feel that would have been easier to deal with in the long run). 

I'm grateful for my employer and the insurance that we have because of my employment.  I'm grateful for being able to work at home which gives me more time with my husband. 

So each time one of you caregivers want to give up and throw in the towel (myself included) try to stay positive and take a deep breath and remember what Cholangiocarcinoma HAS given you!  Another chance to express your love for your spouse, father, mother, brother, sister, aunt, uncle, cousin etc.

Go with God and KEEP KICKIN' THAT cancer.

I'm HOPING for ANOTHER three years!

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Beautiful message, Margaret.

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, what a beautiful Post for me to wake up to today. Now I know it's going to be a good day!

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: My Husband and Cholangiocarcinoma - Part 2

Margaret
That's a beautiful post and so true.

Here's wishing yourself and Tom another 3 wonderful years.

Gerry

Re: My Husband and Cholangiocarcinoma - Part 2

Thank-you Margaret for putting this in words  It all rings true for me. Here's to the next 3 years with Tom! Hugs. Nancy

Loving my husband from afar.

Re: My Husband and Cholangiocarcinoma - Part 2

Oh, I feel SO MUCH BETTER NOW!

Tom had an appointment at the VA in Iron Mountain today.  As we were making our way to the Eye Clinic I saw a sign on a door 'Oncology, Dr. Singh' and said "Oh, Dr. Singh, gee, my husband is still here!"  The door was ajar and I almost walked in to speak to him, but Tom stopped me. (Drat!)   

A few hours later when we were leaving the eye clinic, we walked past Dr. Singh's office again, and lo and behold, Dr. Singh came walking out and was behind us.  Before Tom could stop me, I turned around and said, "Oh Dr. Singh, remember us?  Margaret and Tom Lepp?  I'd like you to meet Tom again, he's the one you told that he had six months and that Chemo and / or radiation would not help him.  You told him to go home and die and you told him that he would die within 6 months.  I'd just like you to know that it's been 18 months since you said that, AND Radiation and Chemo DID help, and the last time I looked at his butt he did NOT have an expiration date stamped on it.  You should NEVER tell a patient that there is nothing that can be done until you have exhausted all avenues of care!"  Want to know his reply?

He put his hand on my shoulder and said "Sometimes we can be wrong" and walked away.

I now feel the need to file a complaint with the VA regarding this Oncologist.  He has never once set up another appointment with Tom, has never contacted him again questioning his need for an oncologist (Because most likely he figured he'd died because after all he did give him only 6 months!)

Feedback?  Did I do the right thing by confronting him?  Should I go ahead and file a complaint?

I do know that I FEEL better now that I spoke my piece to him!

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Good for you, Margaret. With that said I don't think complaints mean a thing. Its like a local Market here. I once complained that the shelves were empty and the produce all rotten. They apologized and wanted to give me a $25 gift certificate for the store. I said, "No thank you. Why would I want a gift certificate when the shelves are empty?" In other words I think most complaints fall on deaf ears. If you feel better that is the best outcome. What I want to know is, when he said sometimes we can be wrong, did he say it nicely or sarcastically? Guess that would be my deciding factor. Bottom line, you did well.

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.

137 (edited by mlepp0416 Wed, 16 Mar 2011 22:19:00)

Re: My Husband and Cholangiocarcinoma - Part 2

The problem is that he said it SARCASTICALLY, kind of like "So what, so I was wrong, big deal!"   It also bothers me that during the time when he WAS caring for Tom and WAS his oncologist, he NEVER once examined him, did a CTScan or MRI or anything!  If he'd have been on top of it, we may have caught the tumor before it got so large that a stent could not be inserted and Tom may not be living with his lady friend attached to him.  (The external bile drain bag).

I'm thinking that I'm at least going to be writing a formal letter of complaint because I feel that it may help some other Veteran down the road. 

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Ah so. Yes, I would write a letter too. I seem to be getting good at that, unfortunately!

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: My Husband and Cholangiocarcinoma - Part 2

Go Girl!!!

I would have done exactly the same thing if I was in your position. If a letter makes you feel better, write that too.

Love to you and Tom x

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: My Husband and Cholangiocarcinoma - Part 2

I bet it felt so good after you said that, congrats! And if it will put closure for you, write the letter!

Cathy
"Life is 10% of what happens to us and 90% of how we respond to it"

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret....this is exactly why I swore the VA was not going to touch my husband once he was diagnosed.....the Charleston VA is practically right across the street from MUSC. Ott could be getting his drugs from the VA....IF he went thru their Oncology department first and then got referred back to MUSC.

But I have  a BIIIG Problem with the VA--- IN June of 2009, he went to the Columbia, SC VA for an initial physical and bloodwork. He was diagnosed with high cholesterol, given a prescription for Simvastatin, and told that he would be scheduled for a follow-up appointment. We requested an appointment for a colonoscopy because he had had polyps in 2004 and had undergone a colon resection. We were told that the Nurse Practioner had not written a note about it, so she could not schedule it. Apparently she didn't schedule the followup either....we tried to call and get an appointment , but were bounced around from office to office and never got through. My husband said to heck with it and stopped taking the simvastatin when they ran out.

Once he was diagnosed in May last year, we went to the VA to get a copy of his health records --- he was at the maximum number for "normal" bilirubins....they gave him statins when his numbers were dangerously high, and never followed up!!! I would love to file a complaint, possibly sue......but my husband doesnt think anything would come of it at all....

Very frustrating.....but they will NEVER touch my husband again.

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Julieanne, I would go after them! My husband, Teddy, was in his last 4 days of life and I transferred him from home Hospice to In Hospice. Biggest mistake I ever made. Long story short, I had his pain under control, they did not give him his Morphine and it was a tragic and horrific end. I made a video on UTube at the request of a lawyer/advocate. 2 of the 3 Nurses were fired and now because my daughter and I cannot get those days to go away we are looking at things we can do as it comes under Nursing Home Neglect. I asked for his files and was more upset when I saw them. Hospice on the whole is good but this should have never happened. We feel we need to step forward so these things do not happen to others. We are also hoping for closure so that we can remember the wonderful times and not the very end. Letter writing can be so cathartic!  Hope things are moving along otherwise for you both.

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: My Husband and Cholangiocarcinoma - Part 2

I am a big fan of letter writing.  My M.O. is that I write a letter, save it, re-read it one weeks later, then finalize it.  I tend to get my anger out in the first "draft".....then try to remove that anger so I don't come across as a "complainer."  The final round gets my facts across in a more sensitive and calm manner, which is sometimes more effective.  - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: My Husband and Cholangiocarcinoma - Part 2

The hard part is figuring out where to start? Who do I complain to?

Re: My Husband and Cholangiocarcinoma - Part 2

So now for the GOOD NEWS! Tom has a CTScan on Wednesday Morning and we met with his Onc today.

Very little tumor activity! The main tumor has decreased in size (although it's still blocking the bile duct) and there are two other spots (lesions) that have gotten a tiny bit larger but mostly the edges appear to 'thicken...' which could just be scarring. Since he has NOT had chemo in over three months, his onc is VERY pleased with all his numbers, and he is gaining weight! He is offically 118 lbs. His Alk Phosphate is holding steady at about the 900 range. Which appears to be his 'new' normal for him! No mets (AWESOME) to anywhere in his body. We follow up with his Onc in 8 weeks unless something happens between now and then. Keep those prayers coming, it's working. Tom is gradually coming to terms with his NEW NORMAL life....

Re: My Husband and Cholangiocarcinoma - Part 2

Go - Tom - Go!  Great news.....

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, music to my ears!

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: My Husband and Cholangiocarcinoma - Part 2

Margaret,  Such good news.  Keep it coming.  smile

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Husband and Cholangiocarcinoma - Part 2

Wonderful News!!!

Love to you and Tom x

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret...this is fantastic news.
Keep it coming.
All my best wishes,
Marion

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