Hello folks.
I was going to do an update, but frankly a comment in my last entry has left me feeling pretty depressed and not really wanting to contribute anything right now. I know it shouldn't bother me, but it does -- among other things it blatantly responds to my hope of being cured by saying that I'm not, which is in my opinion just shameful. Anyhow, I'm close to having what my one-time roommate in Arkansas referred to as the "boo hoos" so I'm going to try to just keep off this blog for a day or two.
But I didn't want you to think I'd fallen off the face of the earth, hence this quick note. I'll try to update more substantively later this week.
Be well.
P.S. As an aside, a large part of me wants to take the high road and not even mention this, or even delete the offending comment. However this is all part of the journey, right? It's in keeping with the honesty of the blog -- which I think is something you appreciate -- that I report both the hurtful comment and how it made me feel. So in the end, that wins out. Thanks for understanding.
P.P.S. Please don't interpret this entry as begging for sympathy! Not that it isn't appreciated, of course, but this is a tiny thing compared to the many people that face a more dire diagnosis than I did, or who haven't responded as well to treatment. They are the ones most deserving of compassion from all of us.
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Nick, I wanted to e-mail you personally on this but can't find your address. I have learned in the last 2 1/2 years that people are either with ya or against ya and we have
ReplyDeleteno time for those in the latter group. It would
appear to me that "brother Ted"(and I'm not sure that word brother applies) is angry that Dan is having a hard time. Truly something to be angry about. I read Dan's blog and he and Susan sound like great folks but BT's outburst on your blog is
unacceptable. There is never a reason to leave
a negative comment like that on what is YOUR
forum. A friend told me something recently.
She said, "people who are hurt, hurt other people." It's not the right thing to do but it's what happens a lot unfortunately. Those of us with MM or caregivers take the higher road. Even whilst dealing with our own pain, we reach out and help others in our situation as you have. THIS IS WHAT GOD WANTS his people to do.BT should read the Book. This jerk's comment is irrelevent and I hope you can see it as such. Love and Peace to you my friend.
Thank you very, very much. I myself am very saddened that Dan is having a hard time, and I am proud of his resilience in the face of his recurrent disease. Hopefully the new medicines will make a real difference going forward and I believe his positive attitude will help as well.
ReplyDeleteDan (and others out there) are unfortunate proof that while BB's program has had great success with newly diagnosed patients, when it comes to treating people with recurrent disease, they are one center among many and the philosophy behind their approach has not yielded the type of results that set them apart in newly diagnosed MM sufferers. I don't blame Dan and Susan for making the treatment decisions that they did, including their decision that "enough is enough" and leaving Arkansas for Denver. We consider them friends and I hope we are together celebrating everyone's good health in the not too distant future.
Having said all this, and understanding this is probably where BT's comment comes from, it was still quite a blow. I would NEVER stoop to mocking somebody's hope about their treatment, as he did, or mocking their efforts to help others.
Anyhow, I REALLY appreciate you taking the time to comment!!!
OK... so I don't even know the history with Brother Ted and while I have a tremendous amount of compassion for him that he's hurting, HE IS COMPLETELY OUT OF LINE!!
ReplyDeleteListen to me Nick.... you are brilliant, sweet, loving, caring, honest and trusting (which is why you are hurt). You put yourself out there for the world to watch so that you could help and inspire others. That's what makes your blog so fantastic. And that's why your blog MUST be published. You have helped SO many people and inspired so many more. Remember the people that sought treatment because of you just because they 'googled' and found your blog? Those are who you should focus on; not someone who is angry and hurt and projecting onto to you. Can you imagine how many people you will help if you actually get this off of the internet and onto paper?
Believe me, I KNOW how hard it can be when someone takes something out on you when you don't deserve it, especially when you get blindsided by it. I lived a life of it in my early years. But, don't let them bring you down. You will be cured and you will be drinking that champagne! Now go hug your babies and think about them and you spending the next several decades together.
With Love,
Beth
Please continue on as eloquently and honestly as in the past.
ReplyDeleteAnd pay no more attention to the nattering nabobs of negativity. Dude probably would step on a kid's sand castle, if he was in a bad mood.
Thank you, Beth. You are so sweet and I appreciate it!
ReplyDeleteThank you, David -- bonus points for channeling Wm. Safire! :)
Keep on being an example for others, Nick...both in your steadfast commitment to being cured, doing whatever it takes to ensure that, as well as taking the high road....far too few people travel it these days, and the weeds were starting to take it over. :-)
ReplyDeleteJust remember that BT's negative comment is more a statement about him and *his* state of mind and perspective and has *nothing* to do with you. Get back to those positive thoughts, keep your chin up and just keep doing what you're doing, because IT'S WORKING.
::hugs::
Craig
Nick,
ReplyDeleteI am speechless. First, brother Ted is not my brother. He is, however, a friend of more than 30 years and has been a loyal supporter through my 4+ years of dealing with MM, which makes his comments even more inexplicable. I can neither explain nor defend him. You are undeserving of the insult and have been an inspiration (most particularly your good humor) through some very difficult treatment. Do not be deterred and I would hope that no more of anyone's time is wasted thinking about BT. I continue to wish the very best for you and hope that you will continue to share your deepest thoughts and feelings with us.
Dan
Your humor, your insight, and your brutal honesty have been a help and comfort to so many of your fellow travelers, as you know better than any of us can ever really know.
ReplyDeleteIts the childish mentality that holds on to the belief that "I hurt, so I'm going to hurt you to make me feel better." Ultimately, as history and enlightened thinking has shown, it doesn't work. Stop wasting your precious time worrying about the pathetic comments of one poor soul and focus on all the positive aspects of your life and how you've come in the past 10 months.
Nick,
ReplyDeleteDo not let Ted's comment sway your state of mind. Your blog is an open honest reflection of exactly what you are experiencing and feeling as you go through this adventure. Remember Mind, Body, Spirit. Just look at your following. You do not need to validate your feelings with anyone. You have a sharp mind, a strong body, and an undeniable spirit that loves life.
Dear Nick,
ReplyDeleteWe're thinking of you, Jill and the kids down here in Aussie Land. Hope to see you over the upcoming holidays.
Love,
Scott, Columbine and Juliette
nick-
ReplyDeleteyour are such an inspiration to mm patients as well as caregivers. my mom and i have been following your story for awhile. she'll begin the reinfusion stage of her stem cell transplant on monday. best of luck to you.
http://fightingmmlikeagirl.blogspot.com/