iowagirl
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Melinda…thank you. I really would love to limit the exposure to the radiation, but not at the expense of not keeping a good enough eye on this. Yes..I’m paranoid….but at this point, I think I’ve earned the right to be a little more paranoid than the normal population.
I look forward to finding out whaat they tell you at NIH.Julie T.
Duke….You make us all smile. It’s a good day all around. Chemo often kept me awake the first night …sometimes the second one too. Typically, it’s the steroids that do it. Not sure what to say about the location of the port. Seems like you and the cats are going to have to a meeting of the minds on that one. Cats generally win.
Duke…..glad to hear that you got a good “install” on that chemo port. As you know, there really wasn’t anyone crying tears over the fact that I got mine out as soon as chemo was done. It was so poorly installed. There seems to be some controversy over who to go to for installation….an interventional radiologist…or a surgeon. I’ve heard both ways are better and both ways are worse. Gah!
Good luck with the pump tonight. Let us know how it goes. I imagine it will take a bit to get used to it ….but kind of like a sleep apnea machine…at first it’s a big pain in the ……wherever….but after a while, you don’t notice it much.
Will be thinking of you….Julie T.
Cillie,
Glad that you’re “back on track.” You sound more upbeat and positive today…more like you know what you want and you’re going to get it.
I’m sorry I missed your original post. I tend to be pretty sporadic in reading the posts, depending on what I’m dealing with myself.
We all wallow in self pity from time to time…sometimes more than others….it hits when we least expect it sometimes…but yes, I think that the folks on the boards do understand what you’re feeling…more so than others. Sometimes you’ll get advice that doesn’t seem to mesh with your thinking, but that’s okay….because everyone goes through something just a bit different …yet it is all sort of similar at the same time. The best thing is that everyone on here knows how we’re feeling…..we’ve all been through stuff at one time or another. CC is it’s own special cancer beast….and hearing others who have or are dealing with it with determination and clarity really helps.
My husband came up with an article about this guy back when I was first diagnosed ….in Feb this year. I had forgotten about him since then. This interview left out some very interesting stuff about him,. If you want to know more…google the guy. His mind must be going 100 miles a minute thinking up stuff.
Then, it is a matter of the extra cost of the MRI that the doctors keep wanting to use the CT scan instead of the MRI? I asked last time at Mayo about using an MRI to decrease the amount of radiation exposure and what I thought I understood was that the CT gave a better picture of recurrence when it was smaller if it happened. Thoughts?
Wow Mike….fantastic results…and thank you for sharing that with us here. It will give hope to many others going through similar circumstances. Who would have thought you could have had that kind of drop in the numbers? Just plain outstanding.
Julie T
Randi….EXCELLENT article. Yes…I related to all 10 as well…been there done that, doing that…will be doing that again……all of the above. Should be a required 2 minute read for everyone newly diagnosed…and then again about halfway through treatment as a reminder.
DMiller,
I too had a question when my GP referred to my tumor as “on my liver.” I was confused and told her I thought that the CT showed it was INside my liver, not on the outside. Yup…..it was indeed INside….it’s just the common verbage I think they use and sometimes refer to a tumor ON an organ. My surgeon referred to my bile duct cancer as primary liver cancer, further confusing me….but we finally figured out that is another “usage of terms”…and while somewhat accurate, doesn’t really paint the full picture. I don’t know WHY they don’t just say, you have bile duct cancer. In the first situation, my GP did not know at that time what the tumor was….no diagnosis….not even cancer at that point. The surgeon’s remarks were based on the fact, I suppose, that the cancer had yet to be definitely diagnosed as bile duct cancer and it took the pathology of the tumor to determine that. So, she was thus also somewhat accurate in calling it a primary liver cancer at that point in time. I’ve seen various articles that refer to bile duct cancer as a primary liver cancer….yet, that really isn’t quite the whole story. It’s confusing.
I’m wondering why at this point, you are not a candidate for surgery? Where is the tumor located. It’s it too close to an artery for surgery or what? The size certainly shouldn’t keep them from operating…..mine was 5.0 cm.
It seems to me that you’ve had excellent response to the chemo…..and as such, a different interventional treatment may certainly be in order to do something to stop the growth before the chemo might stop working.
I don’t know a lot about radiation with CC, but there are plenty on the boards who do….a lot of collective experience. I’m sure that some will be chiming in soon. The weekends on the boards are always a bit slower with responses, so hang in there and check back.
Julie T…Iowa Girl
Lainy…..sorry to hear about your “visitor” in the night. THREE TIMES….OUCH!!!!
Mary…you are not crazy…not even in the slightest. 36 years ago, our first son died two days after birth. I “thought” i had handled it well over the years….that is, until I decided to clean out some shelves, which included a plastic tub of special items …the little we have left of our son. I opened it…and then sobbed…gut wrenching sobs….so violent, they scared me. Even as I write to you, it brings tears to my eyes. I had apparently never allowed myself to grieve. The same thing happened 6 months after my dad died. We were in the middle of building a new house, which meant moving into a rental and then packing and moving again into the new house. While I was very busy during that time, I was so busy that I again didn’t have “time” to grieve.
So many people just tell us to “get over it”….for some reason, they ‘think” there is some specific grieving time you’re allowed…and then you should “move on.” Well, it isn’t just all that clean and easy. Sometimes, I think the best thing to do in these circumstances is to meet with a psychologist ….to have someone with whom to share these feelings….someone who won’t judge and understands the process of grieving. Friends are great to have….esp to keep us busy and our minds off of things…but you can’t just shove these feelings into a closet and pretend that they’re gone. They WILL come back to bite you in the but eventually and usually when you least expect it.
You are NOT crazy….or stupid…you are totally normal. Wish I could be there with you to “ring the bell”. Doing things like that does help get you through some of the tough times.
Big Hugs,
Julie T.Christopher, First…congratulations on your marriage the birth of twins. You have a very busy household, I”m sure. Those little ones are a constant reminder of why you need to continue fighting as you have been doing. I was elated when I saw your post subject…and still am….but at the same time, I feel badly for you that the resection wasn’t done. That never makes sense to me…..when they’ve already opened you up…..why not move forward and finish the job? I believe you will get there again…..to a place where you can be offered surgery again. You had an incredible response to the chemo and there’s no reason to think that won’t continue and eventually kill off all the nasty stuff. Perhaps this time, they just stopped the chemo prematurely before it had killed off every last microscopic cell. I admire your attitude and will add you to my prayers.
Julie T.
Sammi…I agree 100% with Lainy on this. Celebebrate now..or as soon as you can…even if it has to be in his hospital room. Celebrate every day in some way….sort of like the Advent to Christmas. I just attended the funeral of the father of one of my oldest and best college chums. At Thanksgiving, they celebrated that, his great grandson’s second birthday, his wife’s birthday and an early Christmas, since they were all together. Even Thanksgiving, they celebrated that weekend instead of on the Thursday. Two hours after the last celebration, he went out to his car, sat there and unexpectedly died (note…he had pulmonary fibrosis…not CC…and was 90 years old). He lived a very long and productive life…and he died after having celebrated everything that was important to him. What’s more, the family is also more at peace…because they know that he was happy up to the end…it is being with family that is important, not an arbitrary date on the calendar. So, if Christmas must be early with your dad, so be it….don’t wait. If he’s in the hospital and doesn’t look like he’ll be coming home, then buy a tiny, artificial tree and decorate it with pictures of his kids and grandkids…or other people important to him…along with some of the usual ornaments and lights. The pictures on the tree will generate much conversation with nurses and possible visitors. In fact….even if he might get out of the hospital, get him that small tree now. People put up trees early, all the time. Make a box of cookies/treats for him to share with the staff. Hang some garland over his bed or flower shelf if the room has one. If he’s still with us at Christmas, then celebrate again with him….but there’s nothing “magic” about the “day” of Christmas. Well, there is…but you know what I mean.
Lainy…Oh…don’t you know we’d have tried the same thing?…….I did discover those little bottled gems of water flavorings that are sugar free. That worked for a while, but I also have a food allergy to one of the ingredients in most of them….I suspect it is ascorbic acid…or something giving it the tart flavor. My throat gets sore….swollen inside apparently. Crystal Light does the same thing. Bummer!!! I think I will go for diet 7 up….and just be done with it. The flavor is kind of flat…but no caffeine…no sugar. I’ll get by.
