HD Support

CAITSMOM

Hello, I'm 33 and I was diagnosed in June of this year with HD Stage II. I'm coming up on chemo #9 (out of 12) next week. I'd like to chat with other HD survivors/folks that are going through the same thing. I have a great/supportive husband and a beautiful 3 yr old daughter. But I am starting to feel like no one truly understands what I am going through. Sometimes I feel like an ALIEN in a world full of healthy people (used to be me) Example: When other folks are chatting about daily incoveniences/annoyances I am thinking about having to go for radiation/next chemo/is that another 50 strands of hair that just fell out..They're complaining about a zit when I have a lovely port in my chest...Will life ever be normal again?
Thx,
Caitsmom

movie_dad

Hello, I am also 33 and have gone thru chemo for hd 14 yrs ago and am doing it again for the same thing now just did treatment #2 out of 15 on the stanford v regemin. This time hd is in lymp system and in bone. I fully understand the meaning of comparing a zit showing up on the nite of a hot date and wheter you will have the energy to play with your kids when they are home. I have a beautiful wife and 2 adorable children 2 and 4 that are still coming to grips with the lump in mi chest and new scars {ouchies)as my kids call them. I do know life does go on. Normal is how we deal with what life throws at us this day. e-mail me and we can chat.

dpomroy

Hi,

I know this seems like it will go on forever, doesn't it? It is so intense and changes so many things in your life that it would be hard to not feel that way. I think you should start planning your trip NOW! Take a trip with that supportive husband and beautiful daughter...somewhere sunny and warm as soon as all of this is behind you. This year or so of NOT FUN is worth the lifetime you will gain with those you love. In most ways you will look back on all of this when chemo and radiation are done, and be able to go on about your "normal" life again; but with some new perspectives about what is truly important, a new found compassion for people in tough situations, and so on. Cancer has made me a different, but stronger in many ways, person.

Good luck to you. Write me back if you like.

CAITSMOM

movie_dad said:

Hello, I am also 33 and have gone thru chemo for hd 14 yrs ago and am doing it again for the same thing now just did treatment #2 out of 15 on the stanford v regemin. This time hd is in lymp system and in bone. I fully understand the meaning of comparing a zit showing up on the nite of a hot date and wheter you will have the energy to play with your kids when they are home. I have a beautiful wife and 2 adorable children 2 and 4 that are still coming to grips with the lump in mi chest and new scars {ouchies)as my kids call them. I do know life does go on. Normal is how we deal with what life throws at us this day. e-mail me and we can chat.

Hello movie_dad, Thanks for your response...I've found coping with this disease and the nastiness of the treatment is a daily battle but one that is defintely worth fighting. I know there is light at the end of the tunnel so that's what I'm going into chemo tx #9 with. Yes, it does suck to be 33 and have to deal with this...but you're right life does go on. Plus I am happy for/appreciating the good days..and there are many...Thanks for listening.

CAITSMOM

dpomroy said:

Hi,

I know this seems like it will go on forever, doesn't it? It is so intense and changes so many things in your life that it would be hard to not feel that way. I think you should start planning your trip NOW! Take a trip with that supportive husband and beautiful daughter...somewhere sunny and warm as soon as all of this is behind you. This year or so of NOT FUN is worth the lifetime you will gain with those you love. In most ways you will look back on all of this when chemo and radiation are done, and be able to go on about your "normal" life again; but with some new perspectives about what is truly important, a new found compassion for people in tough situations, and so on. Cancer has made me a different, but stronger in many ways, person.

Good luck to you. Write me back if you like.

Hi dramerth, Thanks to you for your response/words of wisdom. I'm looking for the 'meaning' in having to go through this experience..I feel that at least part of it will be a new appreciation for what is important in life. Words to live by....
PS Funny you should mention a family trip..That's my first order of business when this is all over.
PS How does one email a reply directly instead of posting..It should be self explanatory but the email address would be dramerth@what? Yes, I'm new to this board.

mfoge

movie_dad said:

Hello, I am also 33 and have gone thru chemo for hd 14 yrs ago and am doing it again for the same thing now just did treatment #2 out of 15 on the stanford v regemin. This time hd is in lymp system and in bone. I fully understand the meaning of comparing a zit showing up on the nite of a hot date and wheter you will have the energy to play with your kids when they are home. I have a beautiful wife and 2 adorable children 2 and 4 that are still coming to grips with the lump in mi chest and new scars {ouchies)as my kids call them. I do know life does go on. Normal is how we deal with what life throws at us this day. e-mail me and we can chat.

have you look into stem cell transplant with a donor it is highly successful it cure me

dpomroy

CAITSMOM said:

Hi dramerth, Thanks to you for your response/words of wisdom. I'm looking for the 'meaning' in having to go through this experience..I feel that at least part of it will be a new appreciation for what is important in life. Words to live by....
PS Funny you should mention a family trip..That's my first order of business when this is all over.
PS How does one email a reply directly instead of posting..It should be self explanatory but the email address would be dramerth@what? Yes, I'm new to this board.

You can either e-mail folks from this site privately by first adding them to your "friends list" and then sending them an e-mail, or you can ask if they care to share an at home e-mail address like mine...dramerth@msn.com

stargazer

hello, i'm 22 and have stage 2 HD. I'm half way through treatments. I understand how you feel. My husband, however wasn't so supportive. I was only married just over a month when i was diagnosed. we have since had an annulment. so, now here i am back with my parents. AAAHHHH. all they do is bicker back and forth about alot of meaningless crap, and here i am wishing i could go for a jog, have love again, feel alive again. the other night i was out with my parents and their friends at a buffet restaurant and one of the guys we were with spilled food all over his shirt. he was so concerned about all of the people that were staring at him that it was all he could talk about. finally, i couldn't take it anymore and i said "hey, i'm walking around here bald, get over it." And no, people don't really understand. they wonder why you are so tired all of the time, why you just dont feel like going out, why you need to just stop and cry. its hard, i know. but you're almost done, you have what sounds like a wonderful family, it sounds like you can just start where you left off. only now with a much greater appreciation for what is important in life. you arent an alien, but you are definetly different. you have had a life experience that most will never have. take what you have learned and teach it to your beautiful girl and fill your life with it.

runr

I had stage III B HD and finished my chemo 5 months ago. I remember feeling like you do and that nobody understood what I was really going thru. I had always been a very healthy active person and it was very wearing on me to not be able to be "normal". Halfway thru my treatments I decided to start running again (I had always run) and that seemed to help bring back a bit of normalacy to my life even though I couldn't go as fast or as far. Now looking back on it I can't believe I went thru that. You will feel normal again but I think you need to make an effort during the chemo treatment to feel normal. Hang in there and know that other people have experienced the same thing you have. Life will again be normal but maybe different.
Mary

kavnan

movie_dad said:

Hello, I am also 33 and have gone thru chemo for hd 14 yrs ago and am doing it again for the same thing now just did treatment #2 out of 15 on the stanford v regemin. This time hd is in lymp system and in bone. I fully understand the meaning of comparing a zit showing up on the nite of a hot date and wheter you will have the energy to play with your kids when they are home. I have a beautiful wife and 2 adorable children 2 and 4 that are still coming to grips with the lump in mi chest and new scars {ouchies)as my kids call them. I do know life does go on. Normal is how we deal with what life throws at us this day. e-mail me and we can chat.

My son was diagnosed with HD October of 2002. He was 18 years old had just started his freshman year of college. He finished his 6 months of chemo in March 2003. He went through everything incredibly well. He always tried to have a positive outlook and was always acting more concerned about others rather than himself. Now that treatment is over, I am worried about him that he is having a hard time moving on. He is still in school - never stopped going. He would come back and forth for treatments. He will not date. He says no woman would want a guy with cancer. Even though his doctor says he will live to be an old man. I don't think he believes it. Do most people have these feelings? I ask you because I read that you have gone through this before as a young man and now have a family.