I've had internet connection problems, & am glad to be back online.

Posh, I hope you are able to spend every spare moment with your dad. He sounds like he is ready, so you must at least appear to be too, for his sake. It's the only gift you can give him now.

Yes, MDS is stressful, but so are other diseases. If it's not me, it's my husband I worry about (heart). I guess it goes with the territory (of growing older).

Meanwhile, we have to keep plugging, enjoying every moment, and put our houses in order. When I think, like Mikey, about the very young people who have cancer, how can I complain when I'm over 70 now? I expect to live past my dad's age of 75 (he had MDS too), so that's something to be thankful for.

So, did all you Americans vote today? I'm wearing my button that reads: VOTE THE RASCALS OUT. Of course, I've been wearing that button for many, many years, & there are lots more rascals waiting to come into power.

birdmom I think he has all his affairs in order now. Just waiting. I know it won't be long and of course we never know when but I can't stand the thoughs of losing him so close to the holidays. It just won't be the same. I am so honored to be his daughter and I cherish every moment we have together. I hope you are doing great and will continue to do well! maybe they will find a cure soon!

I haven't written in a long time but, I've been keeping up with everyone's posts. My dad has being doing fair. He is on a pretty routine schedule of 2 units of blood every 2 weeks. He stays positive and we just keep on keeping on.

Poshshorty,
I am praying for you and your family. I am so sorry your dad isn't responding to the transfusions. I know how tough this must be. I have had 2 experiences with my father when we thought we were going to loose him due to infections. My heart goes out to you. Please continue to keep us updated and know that prayers are being sent your way.

Julie

Hey all,

Birdmom glad your back online. We just got blindsided with a diagnosis for my wife being in congestive heart failure so I understand what your saying about worrying about your husband. Here sister just passes away from it and she has already lived longer than the rest of her family did who all died because of it. Just as I have said here, I told her we obviously think about the eventual outcomes of either of these diseases that we have and don't like having them but we can't let that thinking time use up our lives.

If we spend the precious time we have thinking about dying and when we or our loved ones will and all that stuff we are taking away from enjoying all that is really good about this life. The best things we can do for ourselves and the ones we care for is to enjoy whatever time we have.

Posh, you like most of us here, truley blessed that your getting so much time your Dad. When we lose someone near the holidays, it's natural to feel loss around those times but I like the attitude that the holidays, instead of feeling loss, they feel good love and memories that allow them to enjoy that time of the year. It's impossible not to miss someone but when we replace the sorrow with the joy of all we had with our loved ones it makes the holidays even more special.

This stuff we have along with cancer are not like bodies or hearts or other things are wearing out and it, at times, makes me mad to see diseases like this take away so many including the children. We all can hope and pray for the cures we or our loved ones need and just enjoy the heck out of every bit of what we have.

God Bless, and have a great week all.
Mike

thanks everyone. I am not sure if I posted his numbers this week or not. tuesday his plts were down to 10. they would not let him go home and sent him straight over to get 2 units of plts. the next day he had to have his normal 2 bloods. in the last month he has had 4 plts. not good at all. I think about 8 or so blood in that length of time too. he went from every 10 days to 7 now.

Dad is now plt dependent. 2 more bags tomorrow and 2 more blood.

Posh I'm sorry to see the progression with your Dad. Make real sure to have quality in every moment you have together and know your in our prayers.

They have told me I'm transfusion dependent but instead of every two weeks I made it 5 weeks and could have gone a bit longer I think the last time. It's been three weeks now. I'm in the third week after starting the latest round of chemo and have a WBC of 1.3 and platelets of 27. Nothing is "normal" about these numbers other than it is normal for them to drop down and come back up some again. Next chemo is the week after Thanksgiving and will have yet another BM test. In the meantime I'll just be playing dodge em out in the stores and such with so many with colds and the flu.

Posh, once again, know that we are all here with you in our thoughts and prayers.

God Bless everyone and have a great week.

Mike

mike thank you so much. I am glad you are doing so good! with dad being 81 and only one kidney chemo wasn't really an option for him. he didn't want it anyway. we are blessed with the time we have had. they gave him 6 months at diagnosis and he is right at 7 months now. Every day is a blessing.

Posh, I understand completely. Just over two years ago the orginal doc gave me three months and now two and a half years later I'm still getting up with God each day and getting after it with all I have. Thank goodness for my insisting on my doc's review or he would have had me in the hospital going through immediate high intensity chemo which I proably wouldn't have made it through with the ole heart past issues. My doc realized it was MDS even though the blasts were/are at the 23% level and 90 chemo's later I'm still having fun giving him a hard time LOL. He's a good Christian man who, of all things, has one hobby of alligator hunting when the populations get to high - go figure.

Mike

sounds like you have a good relationship with your dr! I wanted to take Dad fishing in florida one more time but honestly I don't think he would survive the trip. no good places around here for him to really catch them either lol. wtg dr on hunting them thar gators! tell him to send me some gator tail! lol

Ah, Posh, things are looking grim, eh? Platelet count sounds pretty darned low.

As for me, I saw the vampire yesterday & my count remained the same as 2 weeks ago. I'm so grateful for Aranesp.

Well, Posh, at least you're not like the dumb blonde who kept wrestling & killing alligators, only to discover that they had no shoes.

Mikey, you're living proof that the Drs can be so wrong. You're a wonderful inspiration to us all.

yep captain it is looking pretty grim. he is now taking 2 units at a time only to be the same or about the same a week later. I hate this disease!

I am happy about your counts! woo hoo! Dad was on those shots for well over a year but his dms was so far advanced by the time they found it.

Dear Posh, You and your father are in my prayers. I'm so sorry to hear about his platelet counts and the numbers of transfusions. God bless both of you richly.
Sherry

Hello all! Just checking in to wish everyone the best. Although I graduated very early from MDS to AML with a 50 blast count, I like to check in here from time to time.
Things going reasonably well. Finished the third round of Dacogen last Saturday. Have needed a few infusions of blood and have a very low white count at the moment (.9). Mouth still a little sore, but getting better.
They've found three unrelated donors and may set a December date on the transplant. They will probably give me something really aggressive to knock back the remaining blasts and than do the transplant.
I've been in California since July and it is unlikely that I will see New Zealand again for a fair while. Our daughter is looking after the house and when they let me out of the hospital, we will rent somewhere, probably Seal Beach California.
Although graduating from MDS to AML is alarming, I'm keen to get on with it.
When I left New Zealand, where they don't have Dacogen available and won't do transplants on folks over 50, I came here looking for a year of regression so I could take my wife to Europe and tick off my bucket list. Now I am checked into one of the world's best cancer centers and fighting this thing. It brings me to tears occasionally,especially after we lost Chris, but this world is an amazing place and I hope to stay here for a while.
Best wishes
Jon