DEVASTATED

Anne,…..My love and prayers to you both. I was very saddened to hear about the turn of events for your husband. Devastated is certainly the word I would use…but it doesn’t seem enough to describe how you’re feeling right now. The nature of this beast is that when it decides to move, it seems to do so very fast and no one is ever ready as we are geared up to fight it. My heart is breaking for you two and hope that you both find ways to enjoy each other and find comfort in each other’s arms.

Julie T.

Lainy, Thanks for being on top of this. I saw your post after I submitted mine.

Dear Anne, no words can tell you how sorry I am for you both except to say you are not alone. A lot of us sadly had been there and we are here for you.
First of all I want to say that I have a list called 10 Signs the end is Near. My Teddy was in home Hospice for 3 months and he really followed the list pretty closely. Yes, we are all different but I believe the more we know, the more we talk about it the whole process is not as scary as what we wonder about. If you email me by clicking on my name to the left, I can send you the list. The bottom line is comfort. Teddy and I talked a lot about it openly with each other and somehow it took the fright away. We had Home Hospice and each time a new Nurse would visit T would start by telling her that we were on our honeymoon. It was the worst of times but in a way we made it the BEST of times! We are all here for you. You never know how strong you are until “strong” is the only choice you have!

Spedo,

First things, first: The lung blood clots are being addressed with the Lovonox. Lovonox is a low molecular weight heparin, which is used to thin the blood for deep vein clots (thrombosis). It is given as shots subcutaneously. I doubt that they will change from the Lovonox as it is the preferred anticoagulant for blood clots for people with cancer from what I can gather.

The Lovonox is not a chemo or treatment of the cancer itself. I suspect you know this, but the way your post was worded, I wanted to clear that up.

The cancer: I can’t remember if you mentioned which chemo your husband was taking first.. Is it gemcitibine and cisplatin combo?

I don’t know for sure what your oncologist will want to do next, but if you are not comfortable with things…or he just throws up his hands…or drags his feet, I would highly suggest getting another opinion…or two…or three…from someone at a cancer center that is very knowledgable about bile duct cancer. Some of the really big time CC oncologists will review your husband’s scans, etc without him going there and others will require him to be there in person. Maybe some of the other people on the boards will suggest a few. I see you are in Canada, but not where.

Also, while I don’t have any personal experience with this, I wonder DNA testing has been done of one of the tumors to see if there is any targeted treatement or trials that your husband may qualify for. If he is otherwise in good health, that is on his side for the latter option.

As for your world shattering…..I truly do get that….as I’ve been there as has everyone else here.

But, right now, your world hasn’t ended….but you’ve been given another fork in the road. It doesn’t mean that new route is a bad one….it may be that the first road , which is “usually” the most logical, just wasn’t the best for your husband. This has happened to many others here on the boards and some of those have gone on to remission or even surgery or stable/chronic disease.

Prayers….you will find many of them given freely here….if you ask for them or not. Many time, I quietly say my own prayer for someone after reading a post. I suspect there are many here who do.

For now….hold each other tight…..cry if you must…..and when you are able ……praise God for all you have been given and ask for strength to walk through this together.

Many years ago, one of my grades school teachers wrote this in my autograph book and it was pretty good advice:

“When the troubles of life seem too many,
And you don’t know just where to begin.
Throw back your shoulders and swallow that sob,
And face the old world with a grin.”

I must go for now. but will be checking back on you.

Julie T.

Spedo…one more thing…..the swelling gradually went down in both legs, though the leg with the blood clot has remained larger and probably won’t change anymore. I wear compression hose also just as a precaution and to help keep the swelling from reappearing, but I had problems with that to begin with since I’ve worked on my feet for 30+ years. I also try to be “horizontal” ….in bed for a reasonable number of hours at night. It was recommended that if I sit, it is with my feet up, but since we babysit a 4 month old, that doesn’t happen often.

Anne….I know the blood clots are scarey……as you know, I also went through that….but your husband is getting the care he needs for them now and that is good. The standard now is to be in the hospital for a week…during which time, they will give him shots of heparin…while trying to get the Warfarin (Coumadin) up to therapeutic level. The level may go up and down before it stabilizes where they want it for a specific length of time. He will have a lot of blood draws during this time to keep checking on that level if the Dr. chooses the Warfarin/Coumadin drug. There is also a blood thinner that you give yourself daily as a shot….which later both my oncologists told me they would have preferred.

I only had one clot in one leg….but part of it broke loose and sprayed most of both of my lungs. Since it was smaller pieces, it didn’t cause an immediate blockage in the lungs. Hopefully, that is what is going on with y our husband also. Several months later…my doctor was listening to my lungs and said that if she hadn’t known, she would not be able to tell that it had happened to me. I stayed on my blood thinner therapy for over a year….and just recently quit taking it. Since I have had clean scans this long, one of the main causes for the blood clot (the CC cancer) is not a factor anymore (and hopefully never again).

Cancer, itself, imakes you susceptible to blood clots, and my Mayo oncologist told me that CC was second only to pancreatic cancer in causing blood clots. In fact, for some gastro-intestinal system cancers, an unprovoked blood clot can be the first sign that a cancer in that system may be brewing. Then, , the chemo also increases your odds of getting a clot.

I was worried at the time that I would not be able to get the adjuvant chemo, but it did not affect that in the slightest. We took the week off that I was in the hospital getting the blood thinner going…..and then we started back in with the chemo. It worked out just fine.

Your hubby is in a serious situation…..and believe me, I understand the fear you may be feeling right now…but he IS in the right place and getting the help and treatment he needs. Hang in there …..our prayers are with you both…..for healing for your husband and for strength for you.

Hugs, Julie T.