26 replies to this topic

[GerryL]

Well said Teds.

I think CML is also teaching me patience and to try to live in the moment, I read a Chinese proverb that I try to keep in my head - "The journey is the reward."

Gerry

[Trey]

I'm somehow stuck on sferrazza's "People suck! -- Love and Peace."sferrazza I think it is an ancient New Jersey proverb.

[GerryL]

Trey,

You could get that printed on your TShirt, all royalities going to sferrazza of course.

[robbieh]

My 12 year old daughter with Down syndrome was diagnosed with ALL last July.  Some people are just ignorant, self absorbed, misinformed, taken aback and don't know what to say or a combination of the above.  Don't let it get to you.  I was already used to dumb, insensitive comments from experience with a child with Down syndrome.  I try to tell myself that most people really don't intend to be insulting.  Total strangers have asked me how old I was when I had her, did I know before she was born,how severe is her Down syndrome, and there's a cure for "that" now.  In response to those last two I have said that every cell in her body has an extra chromosome and unless there's a time machine to take her back prior to conception there isn't a cure.  That gets puzzled looks.  I also tell people she's my daughter and I wouldn't change her.  OK, I honestly could do without the leukemia!!!!

If anyone ever tells me that leukemia is not cancer and there's no organ to be removed I'll have to tell them that no, you can't remove blood and expect someone to live!   Being the age I am I remember the days of  leukemia being a death sentence.  It's hard for me to imagine that people can think it's not a "real" cancer. 

Good luck and try to find some humor in people.  I honestly don't think most people intend to be mean.

[Samcerly]

Hi, I am new to the "group" and wanted to say how much I appreciate you all, already!  I am sorry Christopher and everyone else for the negative experiences you've had, comments for others, etc.  Funny how I can relate already.  I am 39, mom of 2 (7 and 8) and was just diagnosed less than a month ago.  I have some wonderful support, but I have already heard several comments about it being no big deal to have to take medicine daily (ie: some people have to use eye drops daily, take thyroid medication, diabetes medication, etc).  I have gotten some comments regarding my fears with the cost of medicine, knowing I need this medicine forever that there are so many advancements that there will probably be a cure, and I shouldn't worry.  Trust me, I am very aware there have been huge advancements and never in my life have I been so grateful for them, but I still have concerns about exactly what my future holds, and I think they would too if it were them.  I do know that they are not coming from a bad place, unlike some of your experiences, so I can swallow it a little easier.  Wish you all the best!

[Tedsey]

I would like to pay this forward from GerryL.  I think this explains why some people are wonderful to interact with and why most don't quite measure up.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."
-- Elisabeth Kübler-Ross

Teds