Re: My Husband and Cholangiocarcinoma - Part 2

mlepp,
I am still very new to these boards , but have been doing lots of "lurking" to find as much info as I possibly can. I must say , you and your husband are an inspiration. I realize that he is the one who is sick. But, illness affects a whole family , not just one person. You are so brave. I also admire how you seem to have maintained a sense of humour and you are taking the time to help others on this board ( including me )  who are unfortunately new to all this . Thank you.
By the way , I am Canadian so perhaps the "rules" are different , but legally a physician can write an rx for a narc for up to 35 days . Not sure what it is in the US , but it may be easier if your Dr wrote for more days supply at a time. Also, remember when you do pay $$$ , keep your receipt for tax purposes as a medical expense. I am sure you have many other expenses and they all add up. Also, usually a pharmacy can use their discretion when it comes to filling narcs early. If they know your hubby , they should be using common sense and realize that he is legit.

Re: My Husband and Cholangiocarcinoma - Part 2

Lainy, Charlea and Nancy:  Thank you for your posts!  Yes we will be watching the Super Bowl and hoping for the Packers to WIN!  Yes, CC journey is kind of like a Soap Opera isn't it?  Never know when you are going to hit a bump or twist in the road on this journey!

LotsofQuestions:  Thank you for your kind words!  You are right, CC affects the entire family, not just the person with CC.  One of the reasons I continue to come back to this board is to keep my own sanity!  It gives me a place to vent, scream, cry, laugh and to help others who are experiencing a loved one with CC.  My husband and I have been dealing with this for almost 3 years now and I as his caregiver have learned so much that it would be unfair for me to keep that knowledge all to myself, when I can hopefully help others!

I realize now that I missed my true calling!  I should have become a medical professional such as an RN (Registered Nurse) but at this stage of my life I'm not so sure that I'd want to start over!

Doctors in the US can write scripts for more than a 15 or 30 day supply too.  But the insurance company won't refill a script if it's 'too soon' and Tom's issue was that the Veterans had just filled his script for pain pills, but it's mail order and would take 5 - 7 days to get here.  Oh yes, I save receipts for anything medical that we pay, as well as to calculate any mileage for medical, even those trips to the Pharmacy to pick up prescriptions as mileage is also tax deductible here in the US.

I love Canada!  Tom and I go to Whitefish lake almost every year for Walleye and Perch Fishing!  NoLaLu Ontario is the very small town that is down the road from Whitefish lake.  Wonderful memories of Canada.  However, CC has even robbed us of taking our annual fishing vacation.  We have missed two years now and I highly doubt that we will ever get to do that again as a couple because Tom would not be able to withstand the car ride, let alone sit out on the lake for any length of time.  Some things just suck about the cancer.

As for my sense of humor - I look at it this way, I could be full of gloom and doom or just try to find some good things about this journey and if I can't find something good, then I try to put the humor spin on it!

Go with God and KEEP KICKIN' THAT cancer. 
(notice that I never capatalize the word cancer and that is because that word is not worthy of being all upper case letters cause it SUCKS)

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

All:

Another MILESTONE!  Tom will celebrate his 64th birthday tomorrow 2/11/11.  Three years ago when he was first diagnosed with CC we never thought that he would see another birthday, let alone see three more birthdays!  And we will also celebrate our tenth wedding anniversary!  (Hummm, I can taste that 10 year old wine already)

Just goes to show that doctors do NOT know everything!  Tom had an appointment at the VA yesterday and his PCP asked him if he'd seen the VA Oncologist Dr. Sing lately.  Tom said "No, but he's the one that told me that I'd be dead in 6 months" and his PCP replied "Well, that's probaby why you haven't seen him then, he thinks you died".  (Sad but true and doesn't say much about the VA healthcare that they offer to our Veterans!)

So here's to my hubby "Happy Birthday and I'll see you next year, same time same station!  I Love you more than you will ever know"  and "Happy Anniversary Honey...the best 10 years of my life...spent with you!"

To all our friends on this site we salute you for being the most compassionate, caring people that we have ever met!

Go with God and KEEP KICKIN' THAT cancer!

HUGS
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Happy, happy, Birthday Tom.  Birthdays always are milestones however, this one represents a mile-rock.   
And, happy Anniversary to you and Margaret.  What a great team you are.
Many, many, more happy days for both of you.
Hugs
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

Re: My Husband and Cholangiocarcinoma - Part 2

HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY DEAR TOM, HAPPY BIRTHDAY TO YOU! (NOW YOU KNOW WHY I AM IN A CHOIR!)

To the Love Birds:

HAPPY ANNIVERSARY and we all lift a toast to the 2 of you!

I was going to sing it again but thought you had enough! Have a glorious 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

Happy Birthday Tom and Happy Anniversary to both of you.   Here's to you and may you have many more.  Keep kickin that cancer! smile

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

Happy birthday Tom!!! And a happy anniversary to you both as well, what a great day!!!!

Here's to many more, and keep kickin' it big time!!!

Best wishes to you and Tom,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

108 (edited by mlepp0416 Sun, 13 Feb 2011 12:50:53)

Re: My Husband and Cholangiocarcinoma - Part 2

Slight setback this week, Tom now has Pneumonia (sp?) and has two new antibotics to fight that and a neublizer (sp?) which he has to have every 6 hours.  They did put some cute little face masks in (fishy and duckie) since these Neublizer's are generally for little kids.  My daughter wants the face masks for her little son who also uses one but does not have the cute face masks!  She thinks he may sit better for his treatments with a cute face mask. (Good luck on that!)

I do have to admit that this Pneumonia has really gotten Tom's spirits down but we had another 'wifely' talk last night and I'm hoping to see a quick turn around in his demeanor. I took him out for prime rib in honor of his birthday and our annivesary and he ate quite well.  He is also taking the Megastrol which is increasing his appetiete....so other than the Pneumonia all is going pretty well.

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Sorry to hear that Tom got PN. Who wouldn't living in the Tundra? Hope he gets better really quick and I can imagin the wifely talk scared him to pieces!!! smile:)

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

Hi Margaret,

Sorry to hear that Tom has a bout of pneumonia, hopefully the new antibiotics will do their job here and kick this right into touch. And I am sure that your "wifely" talk will have the desired effect in turning Tom's demeanor around! Having never been married ever, I have never been on the receiving end of such "wifely" talks!! I hope that you had a good day yesterday and the prime rib sounds most tasty indeed!

My best wishes to you and Tom,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

111 (edited by mlepp0416 Fri, 18 Feb 2011 00:09:09)

Re: My Husband and Cholangiocarcinoma - Part 2

Ok, can I scream now or shall I wait for later?  Let the roller coaster stop already.  Tom has been down and out for a few days, so today he went to the doc, and his blood sugars are over 800.  His doc wanted him inpatient to start an insulin drip (pancreas may not be working right, therefore the extremely high blood sugars)....at first Tom did not want to go, but at 5:30 (right when I got done with work) he decided he DID want to go.  So, I'm sitting here patiently waiting for the doctor to call (don't want to present through the ER cause we don't need that added expense) --- now of course, Tom's PCP is gone for the day and the 'so called, on call' doctor just called, however he does not know Tom, nor his condition, etc...so he's going to 'see' if he can get ahold of Tom's PCP to question him as to what he should do.....(it's EASY idiot, just get him admitted!)  I can't believe this......

So, just hangin out here waiting for someone to call back and tell us to go to the hospital.  Why does it have to be so difficult?  Wouldn't you think that the doctor, in this situation, would have briefed the on call doctor as to Tom's issue and that he may be calling back for an inpatient admit??  Geez, even I can figure that out -  just got the call back from his PCP!  YAY - so off to the hospital we go, they will have a bed waiting for him....thank you very much to his PCP, not the 'on call' doc.

Keep Tom in your prayers!

HUGS,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Good luck, Margaret.  Both you and Tom are being send good wishes...........

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

Re: My Husband and Cholangiocarcinoma - Part 2

Gosh, Margaret, stop spreading the news when you are on a good roll as the CC elf I guess doesn't want to hear it.  Good gravy girl, enough already! With that little rant aside, I am sending my prayers, and a special hug!

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.

114 (edited by cldymond Thu, 17 Feb 2011 21:29:39)

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret: I empathize totally with your frustration! Two weeks ago, Herb and I were leaving an appt. with the surgeon (who decided that Herbs second external drain into the gallbladder should remain in .. as surgery would be life threatening)we walked out of the hospital and Herb slipped and fell. Off we went to Emerg and sure enough ... he broke his arm near the shoulder "through and through". You have to wonder, when is enough enough? Hoping you hear very soon and both you and Tom will get the immediate attention you need. Thinking of you both and wishing Tom the best.
Cheryl
P.S. Herb is, in his usual manner, coping well ..his attitude is .. at least I didn't break my hip!

Re: My Husband and Cholangiocarcinoma - Part 2

Cheryl, I am loving Herb! He has that Teddy attitude and to know Teddy was to love him! Tell Herb I am surprised he didn't tell you 'he was falling for you!"  Hope he is AOK!

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

All:

Thank you for your support - and I mean that from the bottom of my heart!

I just got home from the hospital - O what a day this has been!  Tom is in ICU and holding his own.  They got an insulin drip started and his blood sugars were down to about 275 when I left.   At this point, I don't know much more than that.  I'm certain they will be running some more tests tomorrow to see what caused his blood sugars to get so out of whack, and I'm hoping it is not the pancreas causing all the issues.  Funny thing, the palms of his hands are bright red??  I did mention it to his ICU nurse and they will have the doc check it out tomorrow. 

This lil momma has got to get to bed for some much needed shut eye!  Love all you guys!

Go with God and KEEP KICKIN' THAT cancer!!

Margaret

PS:  Lainy I like your comment about Herb!  He sure could have made some more brownie points with Cheryl if he HAD told her that, eh?  Maybe he can use that 'next' time but hopefully there won't be a next time!!

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret....may Tom's blood sugar continue to move in the downward direction.  I am hoping for tomorrow to be a better day.  The red hands are a puzzle.  I can't remember anyone ever mentioning it.  But, by now I have come to accept that this disease tends to throw new symptoms at us at. I am thinking of you and am sending all my best wishes your way.
Love
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

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

I hope you are getting the much need sleep and that things will be looking better for Tom today.  Thinking of you both.

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

Good Morning Sunshine~Margaret! Wait, you live in Greenbay, Sunshine may have been too strong a word! I just want to say that red palms sounds like an allergic reaction to something. I got that once from an anti biotic. Wishing you and Tom a much better day today!

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

Hi Margaret,

Sorry to hear that Tom is back in the hospital again. I hope last night you managed to get some sleep and I hope that today is a much better day for you and Tom.

My best to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

Yay!  Just got my man home from the hospital.  His blood sugars came down quite nicely and he was on the insulin drip all night and most of the day today.  I think his doc really wanted him to stay one more night, but it didn't make any sense to me or Tom, so we requested that he be able to come home, and the Doc complied with the understanding that I would be monitoring his blood sugar levels closely.   

I will be keeping my 'eagle' eye on his insulin intake and his blood sugar levels - see what happens when I leave it up to him?  (Kick in the behind for me, I SHOULD have known better!)

Doc also put him on some medication for his pancreas - just to 'help' it do the job that it's supposed to be doing!  He's on Pancrelipase (Creon 12,000 units oral delayed release capsule) which is a combination of three enzymes (Lipase, protease and amylase)  These enzymes are normally produced by the pancreas and are important in the digestion of fats, proteins and sugars  Pancrelipase is used to replace these enzymes when the body does not have enough of its own.

I was there when his doc came in today and he was not concerned about the 'red' hands.....so I guess we won't worry about it either!  But I will keep an eye on them! 

Thanks again to everyone!

HUGS

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret - So glad you got home and you will both get some rest.  Things seem to be under control.....P.S.  We can never leave men too their own devices!  LOL.....have a great night.

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

123 (edited by cldymond Sat, 19 Feb 2011 13:23:09)

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret - So glad to hear you and Tom are home!! Even in the frustration that new developments can cause, there is always light.Somehow, it takes a "little jolt" to make us aware, again, of how wonderful time at home with our loved ones is. There is a special peace at home. Enjoy !!
Cheryl

Re: My Husband and Cholangiocarcinoma - Part 2

Wow, almost two weeks with no 'new' developments!  Tom goes in for his scheduled tube exchange tomorrow morning at 7am.

Since the episode with the high blood sugars, I have been on a campaign to get Tom's diet changed.  Only whole wheat bread and pasta now gets through the door!  Diabetic candy, sugar free jam and jelly, wheat flour, wheat pancake mix, wheat waffles, diabetic syrup just to name a few!  (Boy it IS expensive to eat healthy) 

And I also am monitoring his daily blood sugars and managing his insulin.  He has been feeling a lot better but will take another week or so to get those numbers back to where they should be.  They are slowing upping his morning insulin.  He was at 15 units a day and today he started taking 23 units (every three days he goes up 3 units)  and I'm thinking that once he gets to 25 units a day we will be where he should be.  Then he'll only have to take his 'fast acting' insulin one or two times a week (and probably only when he eats something he shouldn't be eating, when I'm not watching him!).

At first he was so worried that he would not be able to eat anything!  I laughed at him and did a ton of reseach and came up with lots of things that he CAN eat and still keep his blood sugars at a more normal level.

He has taken this all in stride (amazing isn't it?) and now asks me "Can I have a snack?" - between meals or at night, and depending on those blood sugars, then I give him some options.  Apple with peanut butter (he needs the calories), 4 peach slices in light syrup, 2 cups air popped popcorn, just to name a few.

I'm certain that his tube exchange will be nothing but normal.  The interventional radiologist has exchanged Tom's tube at least 15 times so far and I think he has it down pat by now and could do it with his eyes closed!

Hugs to everyone!

Go with God and KEEP KICKIN' THAT cancer!

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret......Your food campaign surely is benefitting Tom.  Everything sounds great.  Good luck on the stent exchange but, as you have mentioned we expect Tom to sail right through it.
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