The will to live.. when you have MDS

[sarah]

Stepanie, what classification of MDS do you have?

[Stephanie]

Hello Sarah, I think I remember you from writing back when I was 1st diagnosed? I have also been searching for a donor match since the onset of this horrible thing~ since I was not involved in the work place I had a lot more time to research the disease and communicate with others. I have also found that for me…(everyone is so different) if I keep the facts of my illness out of my sight and mind as much as possible and focus on the positive things of Life, I do a lot better. Not that I am in denial, I just spent the 1st 2 yrs of diagnosis in bed and connected to IV poles, constantly exploding vein after vein (very few good 1’s left) and trying things the way the Drs. wanted to do it (trials). I’ve decided the best way for me until something better comes along, is supportive care. I have MDS-RAMD. Very low and very erratic white, red and platlet counts as well as 11-15 other characters in my blood. If there was a stem cell or bone marrow match I would do a transplant in a heart beat! I’m young and I have trained my mind and body to handle the low counts w/o having the feeling like I am dying! (like I did at 1st) I actually feel somewhat normal if I can overcome the pain on a good day. I guess its just because my “normal” has changed so much. For this I have had a Itrathecal (sp) Pump implanted in my stomach that feeds a very small amount of meds from my spine to my brain. It works great compared to the weight of the heavy drugs I was on before the pump. On another note I have had a problem w/repeated meningitis, however, the Drs. believe it may have something to do w/another underlying problem. How are things going for your husband? He is fairly young for the disease also.

[sarah]

Stephanie, sounds like you have been through alot. Just have to take things one day at a time. My husband passed on Jan 9, 2006. This past year has been the hardest of my life.

[Stephanie]

Yes maam, I am so sorry to read that. I was just reading through some past entries and read that and skipped right back over here to appologize. It has been a while since I have navagated this web-site, so when I went to answer your question I hit “full reply form” by accident, which wasn’t a big deal except for the fact that it took all of the personal information about you and your husband off of the bottom of your last entry for some reason? Therefore, I could not read that info for myself without sticking my big ol foot in my mouth. I just could not imagine living your life with a spouse and loosing them! I truely feel for you and Please know from the bottom of my heart that you will be in my thoughts and prayers. Are you in any kind of a local support group? Besides this forum? I am one of the leaders of the Cancer Resource Team at our church. It is great for support, to get together and help others. For me to be able to help others is a great way for me to focus on the positive. It is a huge church, 12,000 members. If someone gets diagnosed w/cancer and needs someone who has been through it to talk to there we are, then there are also our spouses, who help giude the caretakers and make sure they get what they need and that kind of thing. It is really great! Take care of yourself! God Bless you!

[LuAnn]

Hi Wendy,
I’m sorry to hear about your dad and I know how difficult it is to be a caregiver. My dad was dx in 1996 w/MDS RARS which is the low risk version. We have been very fortunate as the MDS had been under control up until about a year ago. Prior to that he survived 2 sub-dural hematoma surgeries followed by an aortic valve replacement and then a hernia removal. His oncologist is very informed and helped get him thru these traumas. All the while dad fought to feel better. He has a very strong constitution and drive naturally but he has also been on Prozac for a while which helps him cope. Perhaps that might help your dad deal with everything he is going through. Also, Neil always gives great information and insight. (Thank you Niel!)

My dad has been having a very difficult time (3 xfusions this past week; Sunday, Wednesday and Saturday), and I’m going to show him Niel’s post and try to get him to try the berry. He’s 83 and traditional so it will be difficult but worth a try. Good luck and keep us informed. This forum is a God send and it’s amazing the information shared. You are all in my prayers.

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