My Husband and Cholangiocarcinoma – Part 2
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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,
MargaretHi 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
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!!!
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
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
Happy Birthday Tom and Happy Anniversary to both of you. Here’s to you and may you have many more. Keep kickin that cancer!
Love & Hugs,
DarlaHAPPY 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!
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
MarionAll:
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
MargaretLainy, 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
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.Good news about Tom! 15 months with more to go! He is kicking that cancer butt! Glad to hear things are better with you and your brother too!!
Have a great weekend!
NancyMargaret, I felt like I was following a soap opera and the writers were trying to see how many wrenches they could throw in to up the excitement! I cannot believe that you were still able to write with some semblance of sanity with all that you were coping with…you go girl!
Margaret, some story, girl. So many incompetants around lately. Good luck on the tube exchange. Are you guys excited for Super Bowl? I am invited to a party where I am the ONLY Packer Fan. You know Teddy will be busy coaching!
Win or loose, how he would have loved this one!Tom goes in for another tube exchange on Monday the 31st of January. It should be fairly routine.
Slightly funny story to share. On 1/6/11 his PCP gave him a script for Morphine, 60 tabs. Every 4 hours. (which is about a 15 day supply and we were at day 22)
Since his medications had not yet come from the VA, his oncologist gave him another script for 60 tabs since he only had two left.
He dropped it off to get it filled and the pharmacy said it could not be filled until the 19th of Feb.
When I called them to find out why, they said the insurance said it was a refill too soon. We figured out that the VA had most likely FINALLY refilled his morphine on 1/27/11. (It was ordered 5 weeks ago, but someone at the VA fumbled that one and it wasn’t until after Tom called the VA last week Monday questioning as to why it had not yet arrived, then they checked on it and his doc at the VA finally got it ordered and they were putting a ‘rush’ on it)
Well, I knew that his morphine from the VA would not get here at least until Tuesday, so I asked the pharmacy if we could just buy them and not run them through the insurance, she said she’d have to check with our insurance to ensure that it was the VA that had filled them. It was the VA Mail Order, so the pharmacy called back and said they could fill them under self pay and it would be $22.79. Since he can’t go for 4 – 5 days without his pain medication I told her we would be right down to pick them up.
I realize it’s a controlled drug, and they need to ‘control’ it so it’s not abused….but for heavens sake the man has cancer and so what, the insurance would deny him his pain medication??? Whatever! So there is a way around it, just don’t run it through your insurance and pay for it yourself!!! Something to keep in mind if you ever encounter something similiar.
In general Tom is still feeling pretty good, he had blood work yesterday and his bilirubin is at 6.7 – so that is holding pretty steady. His Alk Phosphate is elevated again up to 1258, (it had been down to 958) so I’m a bit concerned about that…and his amomnia levels are high again, so now he has to take a lovely cocktail to make him go to the bathroom. The only way to get rid of high amomnia levels is to poop it out I guess! You can imagine that he is just thrilled about that!
He has the tube exchange on Monday, a CTScan on Friday and goes back to the Onc next Monday to get the results….then they will be making a decision on Chemo. And believe it or not of all the people going to Aurora BayCare Vince Lombardi Cancer Center here in Green Bay, there are only TWO people who have ports installed for chemo! I found that very hard to believe!
And in three days, we start the 15th month of life, so when your doctor tries to put a timeframe on when your life will end, don’t accept it! Tom is a great inspiration and we never gave up! If we would have listened to that oncologist I believe that Tom would have passed on within that 6 month time frame. Instead we pushed for other opinoins and found out that there were things that could be done, and he is living proof that Dr. Sing was WRONG! But is is scary that some people put so much stock in what their doctor tells them that many may just give up and do nothing and then yes, they may pass on as soon as their doctor predicts!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
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