irenea
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I miss you, Jeff. I trust you are resting in peace and, as always, taking it to the limit.
Love,
IreneHi Mark,
I guess you have many issues to consider. Was this an incidental diagnosis or did you/do you have CC symptoms? If you do choose chemo, I think having folks checking in on you is cruial. I know — as a person who lives alone — how much you feel like you are imposing but it turns out that the people who are a bout you are anxious for something to do to help. They may not be able to cure us, but if they came and hold our hand on a hard day, it means a lot: to your friends and to you. Also many local chapters of ACS do provide some transport help if that is an issue regarding chemo.
Please take good care, and
Courage
-IreneHi Lisa,
I am so glad you’ve had a relatively smooth process with the Social Security — that can be such a nasty process to navigate.
I am sure your feelings are so mixed about retiring — I think It’s great that you’ll be on-calling for a bit but takes the pressure off of you.
Take care of yourself.
-IreneHello All:
First — I want to thank all of you again. I truly believe in the power of good thought and spirit and I think the vibes were of great help to me today.
So here’s my update. The bad news is that there is now a second, tiny tiny (less than a cm) tumor also in the liver, sort of off by itself, nowhre near a wall, a vein, or a node. There are also three lymph nodes of increased size, which clearly tells us there is node involvement. (At my last check in October 08 the nodes were identified as “probable” involvement but now they are bigger and the situation seems more clear.)
The good news, however, seems to be fairly good news: while the tumor has grown, it has grown only 1/2 cm (it went from 6.5 in October to 7.0 today). Doctor was very clear that this is what they’re calling a “lazy” tumor and he said “growth was slower than we’d expected.”
Doctor did suggest chemo which I again declined — at least for now — but he was much less insistent, and said it was something we should talk about again when he does the next scan in 3–4 months. Also recommending Gemzar only as opposed to the three-drug cocktail he strongly wanted me to be taking last year.
Overall, the news was good (relatively speaking, of course) and in fact the doc said I may have 6 or 12 months before I start to see serious symptoms. This may not sound like a long time, but I will tell you all that last summer these folks had me dead in a year. I fully expected that I would not make it to my 45th birthday (which is in September — and hey — I like watches!) and now it sounds like I might just make it there, and then some.
So…obviously the presence of the second tumor is bad bad bad, and the growing lymph nodes bad. But overall I am esctatic at the fact that the primary tumor is so d*mned lazy (my tumor takes after me — how sweet!) and that as of today, my liver function remains perfectly normal.So — it’s a mixed bag, but I’ll take it, and will try to honor the time I do have left.
My deep affection — no, make that my love, to all you. We struggle, but none of us strggles alone.
Courage,
IreneHi Mary:
I’m with you — the more I live with this disease, the more I understand that no one can say anything about it with certainty. I probably won’t make it to be an old lady either, but I’ve already beat some of the most dire predictions.
Courage to all of us,
IreneHi Sophie:
As usual, I have no sage advice, but am glad to see a post from you and wanted you to know I think of you often (since we both got cholangioed, as I like to call it, at about the same time.)
Courage,
IreneDear Speckled:
I agree with you wholeheartedly — I think more and more than the quest by doctors to do “something” may do some CC patients more harm than good. Having been through this as we all have, I fully understand the powerlessness and understand, too, that doctors can HARDLY STAND when the patient chooses to do nothing at all, because this goes against everything the doctor “knows.” But with CC, I am not sure the docs know a whole lot more than those of us who are afflicted.Sure this is a grisly topic — but one all of us have spent a lot of time pondering.
The fact is, the docs don’t know the answers any more than we do. I am thinking more and more than some people live normal lives for YEARS with a tumor slowly growing, never knowing it until it reaches a certain point of causing symptoms and impacting the function of our bodies.
I have a theory — based on nothing since my only medical degree has been earned watching “House” — that there is something of a slower growing (indolent) form of tumor that affects women in 40’s/50’s, oftentimes women who are “Rubenesque” (meaning we score a little high on the old BMI scale) and women who’ve had some issues with polycystic hormones or other hormonal irregularities.
Anyway — thought I’d toss in another 2 cents. How much does that make?
Hi —
I agree — MUCH MUCH too young to be hit with this.I an interested that you mentioned PCOS — that has been a problem of mine for many years, and i absolutely think that there is a connection between the two.
As many others have said, attitude does make a huge difference — take control as long as you can.
Courage,
IreneHi Hollie:
It’s so kind and supportive of you to provide updates on Sophie’s behalf. Please know we all love her and are thinking of her.
Irene
Hi Kris:
I am a redhead too — and if anybody can even tame this beast a little bit, it’s us! Seriously, though – all my thoughts are with you. The idea of the chemo goody bag is so strange it makes me laugh — I think it struck you that way, too.
Take good care,
IreneHi —
Your story sounds kind of similar to mine. I am 44 and the tumor (intrahepatic) was an incidental finding. Unfortunately, surgery to remove the tumor was unsucessful. I have no particular symptoms at this point with the exception of a general fatigue and some ongoing bowel problems (which existed to some degree for most of my life.)
At this point I’ve chosen no traditional treatment, as I am not truly convinced that chemo does more good than harm in cases like mine.
I am interested to hear that you were not asked to do chemo or rad as a follow-up to surgery; it seems like lately most docs have more or less insisted on this, even though there seems not a lot of evidence to suggest that the chemo does a whole lot, either on its own or as an adjunct to surgery.
It is a scary path indeed; I am not certain that anyone on the planet not experiencing this can understand how it feels to live with this every second, every minute.
-IreneHi —
I have been much obsessed by the age component of this disease since I was diagnosed (at age 44.) You have to wonder if in some cases, the tumor develops but kind of sits there inactively for a decade or more, only causing troubles as the “victim” gets in 50s and 60s or older? But there must also be some cause for the fact that there seem to be many more younger folks here than there were a year ago.
Irene
