Hi all.

My husband is doing well after surgery and is starting chemo and radiation next week. Thank you for the good wishes for his recovery.

My issue was not that people were questioning me, it was the tone in which it happened. My objection wasn't to the suggestion that we go to MDA, it was to the immediate assumption that we weren't going to MDA because we couldn't be bothered to drive to Houston and that was it. No one here knows our life's story, or anything about our circumstances other than the info I put in my sig line regarding my husband's diagnosis. It made me feel like I "owed" the forum a long explanation of what went into the decision to stay local rather than go to MDA, and that is tremendously alienating. People said we should go to MDA, I said there were reasons why we weren't, and it needed to stop at that point. Someone on my intro thread something like "When we see that you're not going to an NCI CCC we just worry and want to know why." Frankly, what needs to happen is you need to take my word for it when I say that we have considered the option with our medical team and within the context of our family's circumstance. Taking umbrage at being spoken to with such disrespect when I don't offer up the explanation that you (the collective you, not any particular poster) think you deserve doesn't seem to me like taking my ball and going home.

I am in no way a "fragile personality." I don't expect strangers on the internet to coddle me and protect my sad little girl feelings with only soothing words and gentle affirmations of all my life choices. However, I certainly didn't expect to be told to "get [my] spinning head out of [my] behind," and I'm not the sort of person to passively take that comment even when I'm NOT in the immediate stages of dealing with the fact that my husband has a life-threatening disease. I think that comment is the most hurtful thing anyone's ever said to me on the internet, and I'm not new to posting on internet forums (just this one). The fact that I didn't get an official apology from the OCF administrators, just a lot of "oh, some of us are like that here" kind of dismissal, was insult to injury, if you will.

I'm a litigation paralegal so I'm surrounded all the time by smart people who don't hesitate to express strongly-held opinions. I don't have a problem with strong expressions of opinion. I do have a problem with being disrespected and condescended to, particularly after I've expressed that I've taken issue with something that's been said to me. Certainly folks can disagree that what was said was disrespectful, but different interpretations of the situation don't invalidate my response.

I'm also a victims' advocate for the domestic violence shelter in my town, and I know how to speak to people are in crisis. One of the principal rules of advocacy work is that when someone is in crisis, you let them BE IN CRISIS. That means if they don't respond to you in a way that you expect or feel is "appropriate," you just accept that their response is THEIRS and cannot be wrong. My first post here was 27 days after my husband's diagnosis with this fearsome disease, and exactly 1 week after he had surgery to remove a 1/4 of his tongue. He had been home from the hospital for 2 days, with 22 stitches in his tongue and 35 in his neck, and I was trying to help him recuperate, keep life as normal as possible for our 6-year-old daughter, go back to work, keep my house running, and not lose my mind. I was absolutely IN CRISIS. The response I got here broke my heart when I was the most vulnerable I've ever been.

Anyway, that's my 2 cents.