The dumbest things people have said to you/about you

Hello to all - so sorry I deserted you for awhile, (especially you, Barbe!) As some of you may recall, I thought I had decided to go for it with Mistletoe treatment. My Onc was supportive, but investigated the practioner I had planned to go to, and found that his reputation in VT was not very convincing. My onc did admit that recent research has shown some "promising" results for future use of mistletoe, but that enough trials have not been done to make successes conclusive. In addition, it's not FDA approved, so my insurance company will not cover the cost. (They will pay for the office visits, but not the mistletoe). I was actually not ready to give up conventional (if we can call the hit and miss of chemo, "conventional"), meds. I had just allowed myself to be talked into it by some well-meaning people. So, in summary, I missed my onc team and went running back. I tried carbo/gem, but blood counts could not take it. I tried Gemzar alone, and was very pleased with the mildness of Se's, but had to self inject neupogen - (Neupogen hell is what I call it - instant horrific side effects for me - worse than AC!! imagine that!). But no, Gemzar was too easy, so my body reacted by allowing lung mets to go on their merry way and grow, ALOT. 

I am starting Xeloda today - last resort as far as meds go, per my Onc. I wasn't really scared when I wanted to stop treatment four months ago, but now that Onc is considering it, I am scared....

Missed you all - Sorry I have rattled on - cant sleep as I am nervous about the X. I have been posting on the X site - the people there are wonderful! 

Sherry

Reality--I'm sorry the mistletoe treatment didn't work out.  I'm praying the X works for you! 

Reality, if I'm not mistaken, mistletoe is PART of some chemo already!! So you were probably already getting it anyway..... Now get your big girl panties on and focus on killing those lung bastards!!! You can do this girlfriend!!!!

Thanks, Barbe - just what I needed! A post from you. You always make me smile. Thanks again! I will get those panties on right now.

I will be starting my chemo this week and I guess the dumbest thing so far was when my sister started in on the alkaline diet and how I eat too many acidic foods and that I should try to heal myself with natural remedies. Then she told me that I must hate myself to subject myself to chemo.  That was a real punch in the gut, I have small children and really can't afford to mess around with this.

Ditnhm love those earrings!

My DILs mom told me, "it's time to get over this cancer thing, you've had 6 weeks that's long enough" She of course has never had BC, but she did take 9 weeks off work to have bunion surgery!

Hope your bunion does not interfere with your running. I know what you mean about the condition not comparing to cancer. I often ignore medical conditions other than cancer, before going to the Dr. I know I often should not, but the thought of one more form to complete, or test, or exam, or co-pay is just too much at times!  For example, my onc told me to watch for changes in moles I have had for as long as I can remember. I do see changes and know that I have to tell him, but I dread going to a dermatologist as I do not want to start all over in a new office. My onc knows that he has become my go-to GP as I only want to be with him. We really connect - even to the point of not having to complete sentences at times as we know what each other is going to say. I feel very fortunate to have him on my team.

Thanks so much for sharing, NativeMaine. I will check it out. Thanks, also, for understanding! Its a beautiful day in the Adirondacks. 'On my 2nd day of Xeloda and doing well so far. There is half day of school today, so my three grandchildren will be joining me at noon. There is a beautiful lake, just across the road from my cottage. That's where we will spend a lot of our day - picnic and skipping stones at the lake. I hope you also have a very nice day. 

Yes, barbe, it was. I added an avitar of the beautiful lake and mountain I visit daily. I live in a tiny cottage just across the main two-way road that leads into my village. The road is quite busy, but the landscape on either side of it has been preserved, so it is not too obtrusive. I also find that I have to lie down wherever I go, so I always take a blanket. When the urge hits me - no chair is comfortable and I have to give in. (Well, not at the grocery store or pharmacy, but I have put down items and left the store when I just could not bear to stand in line). It's odd - no specific pain takes over - I become suddenly exhausted - just out of nowhere. I used to fight it - and still have to, of course, depending on where I am - but whenever possible - I give in and lie down, darn it! 

Hey, all:  I watch this thread and lately haven't had anything to post.  But today's comment takes the cake.  Was talking to a woman who is in a breast cancer organization, someone who has had breast cancer herself.  I was asking about a retreat they hold for metastatic women.  I was diagnosed out the door metastatic January 2012 and am open about my diagnosis in certain  areas of my life. Mostly, I don't want to talk about because of the stupid things people tell me. This is the comment I got from this woman today.

"I knew a woman who had Stage IV breast cancer, you couldn't tell, she looked just fine.  She died last week."

Now in what universe did this woman think this would be helpful to me?  I gave her my standard people were telling Donna Summers she looked good the week before she died of cancer. Goddamn, I'm just so pissed.  Only reason I shared my diagnosis with that woman was because it applied to a retreat I might want to attend, and she says this?  I need to work up the courage to slap some people.

SoLinda, I appreciate your writing back.  That's a good idea.  Btw, I've also had dumb things said to me by people who are also Stage IV.  I was a talk about Stage IV, and the woman next to me started chatting with me. I asked her where hers had spread. She said bone. She asked me where mine had spread. I said liver. The other Stage IV woman shook her head and said, "Oh, I am so sorry."

Luckily my oncologist was doing the talk and was there when the other woman said that to me. My doctor and I had to educate her that even those with liver mets can live for years and years. 

SoLinda:

At this point, no. Not going on the retreat.  I've got very little leave yet (I'm still working and pray I can continue working).  One of the topics she said they discuss at the retreat is end of life.  I've got my paperwork in order, but I don't want to be anywhere near that topic at this point. Some day I won't have a choice, but for right now, I want to live and focus on that.

Thank you so much for the compliment on my writing. I'm hoping, praying and knocking on wood that I get to be here writing for years.  My comment is that my goal is to outlive all the idiots who have made stupid comments to me.  One of them is my half sister who told me, "I thought people who were terminally ill were nicer."  I told her never, ever to say that to anyone again.  That sister is 17 years my junior. I plan on being here long enough to dance on her grave.

Colt, that is horrible.  And sadly, the medical profession is filled with people. Infallible, often stupid people.  I am very lucky in that the nurses in my chemo unit have got the compassion thing down.  I've heard about what others have had to hear from staff during treatment, and that has only got to make it much worse.  I had enough doctors say stupid things.  But to have nurses whom I saw weekly add to it, no. Don't even want to think of it.

http://www.youtube.com/watch?v=558pNg40hKw

Hope that link works! Just a little head slapping fun

Susan,

Doing pretty well. 3 mos check-up with MO tomorrow. Labs were drawn this past Wednesday. Tried to access them via the patient portal but she never releases them before my appointment.



I don't recall when I added that to my profile. I think it's been a long, long while but we were all so busy with stuff, ya know? I read about the trial but from my reading I missed the cut-off after active treatment. My last rads were 9/13/12 and I'm fairly certain you have to be within 6 months of finishing active treatment - which was March for me. Saw the info on the trial right around that cut-off day. Oh well.

Keep taking my Tamoxifen and I'm fine on it. I wish you could have joined that too.



Other stuff detailed on our thread - the last few weeks.



Glad you enjoyed the head slappin'. NCIS is a favorite for me and love all the references to places we used to stomp around when we lived in No. VA. You must eat it up!



Hugs!!!!