Whoo hoooooooooo Chris. Way to go my friend. Folks tell me all the time that no one can be as optimistic as I am but now with you I have one more person to tell them about. Your time there will be way to short so cram every minute of life into every minute your there and have a ball.

For Linda and the many others that ask about optimisim I'd have to say it's not as easy as a switch that is on or off but it is as easy as the realization of an appreciation of every thing that is there. If you have a 5% moment and give it 100% then it was great one.

For me the Lord and I have been doing this thing called life together for about 45 years now. He has no doubt that I'm not ready to be done with it yet but He also knows that no matter what it brings we are going through it together and no matter how good or bad we're going ot give it every thing we have.

Every day we get up itn's one more day we can say we're survivor, one more day we can like our friend Chris say we are going to define how our life with this junk is not let it define how we're going to live. Sounds silly but I'm a lot happier when I'm happy than when I'm gloomy so I'll take the first choice every time

Have a great week everyone and Chris have ball though we don't have to tell you to do that.

Mike

I am so happy Chris that you got to make your trip! I hope you have the most fantabulous time ever!

Hey Captain...it's great to hear you made the trip okay and sounds like you have a lot to do and see in your 8 weeks in Bogota.
My claim to fame with MDS is the shortness of breath and heart palpatations. I received a transfusion July 1 and am now working my poor husband to death. I can keep up with him now and our yard looks wonderful. I am good for about another 3 months. I have not had oxygen but the transfusions work for me so far. I'm sure it will not always be this easy. Granny....I also have been very active and when I can't do the things I like to do, I also get "down". I feel like this is not going to change and I will never be able to be where I used to be. So far that has not been the case. I leave for Texas, MD Anderson, on Thursday for my 15th or 16th round of Vidaza and it is working for me. My blasts are down and other than the transfusions, it appears I am doing okay. Best of luck to you and your husband and hopefully each treatment he will start feeling better. God bless.

Thanks so much for feedback on shortness of breath. Will ask about lasik-though the one time it nearly set him wild. If you already have issues with prostate the lasik and passing water every 3 minutes urgently is quite a trip.

Mary my dad has had bladder issues for a long time now. we have him in depends now and have had since way before this started. poor thing is uncontrolable. I understand your problem there. Maybe they can give him a mild one though.

Wow, you guys have been so busy posting that I'm way behind. I had a longtime friend visiting the last few days, so I haven't kept up. But she left this morning, & I saw the vampire this afternoon (good news--HGB count rose this time) & got my shot. All is well with me.

Chris, I find it incredible that you can survive a 24-hr trip to Bogota. Just thinking about it makes me crazy. But I'm glad you are there safe & "sound?????"

We are lucky, aren't we, to have a good teacher/captain in our midst? When I hear about my neighbors' and friends' health problems, ours doesn't seem so bad. (I'm not counting the effects on our younger crew--that's a different story.) But our symptoms are relatively benign compared to what others I know must go through.

My dad never complained, even tho he died of it at age 75. Of course, he never understood that he had MDS, as he was convinced he had been poisoned some years before. But that's another story...

My best to all the crew!

hi birdmom. so your dad had mds and you do as well? is this stuff hereditary? just curious on that one.

Birdmom...glad you are back and doing well.
Poshorty...Supposedly MDS is not hereditary but I met a couple people at MD Anderson who also have had a relative with MDS. Is it coincidence? It makes one wonder.

There's no proof that MDS is or can be hereditary, but I suspect my paternal family has a faulty gene that led to father-daughter MDS. My dad's brother died of bone marrow cancer, and one of his children died of brain cancer in her 30s. In my pea brain, bone marrow cancer sure sounds closely related.

In any event, I have warned my siblings to be aware of the possibility.

My doctor said it was not hereditary also. My Mom had something very similar (it's been 20 years so hard to remember) where her symptoms and treatments were the same, multiple transfusions, etc. It was a disease that started with an M but I don't know for sure. The doc says knowing will not impact my treatment as that was a long time ago. I do remember it was not the , lets call it MDS for discussion, that she died from but a poisonous blood infection that could not be treated.

She was a heavy smoker, as was I until 9 years ago when I quit (about 6.5 years before I was diagnosed with MDS).

according to my Dad's oncologist she says mds is bone marrow cancer or at least a type of it. not sure I even like this woman but hey she is the dr right? lol

I think it would be interesting to see how many families actually have this stuff. it sure makes you wonder.

poshshorty, when I first was diagnosed, there were differences of opinion about our disease, as related to me. Cancer wasn't even mentioned. But later, I heard bone marrow, then blood cancer.

No one will ever convince me that my father's family doesn't have a bad gene for this disease. Uncle Eddie's was called Waldenstrom's macroglobulinemia. I don't have the actual cause of death for his daughter; all I know is brain cancer at 37, leaving behind several children.

To me, these diseases are closely related. Considering these two cases in my father's generation, then mine & my first cousin's, I feel there is definitely a hereditary factor.

But so what? We've got it, eh? Until gene therapy advances, it means nothing, except beware to the rest of the family members.

Chris, you promised to email from Colombia, so get busy.

Hey all,

Hope your all headed for a great weekend. My wife gets up at 4:30 to get 50 miles to work everyday so I try to get up with her after staying up til 11-12. I usually grab an hour or so nap afer she leaves. It's been a busy week. I try to get as much in the way of cleaning, laundry and other things done so she doesn't have to do them. I added to that mowing the yard (riding mower) which is about an acre. I fixed here a fancy dinner tonite but had to have her help to get it done right. Seems this time and the last time between treatments have been pretty rough in the fatigue and shortness of breath depts. I have chemo next week all week and usually feel a bunch better. Hope the blood counts aren't real low.. I guess I'm going to have to give in and go for some transfusions in between though don't want to get to needing them just cause I feel bad or have iron problems. We'll see. I'm having some cognitive problems that make me do stupid things like taking all my days medicine this morning.....LOL.

Just wanted to say how things are cause you guys are great just to listen. Life is great and I enjoy every minute but some times it's good to just tell someone how you feel.

Have a fantastic weekend everyone and smlle like you won something.

Mike

Mike,

I like your attitude! Wish I could get some of it to rub off on my husband. He's doing better and since it's only been a little over six weeks since diagnosis, I'll cut him some slack.
Sounds like your wife is lucky that you help out and do a lot around the house to help her. That fancy dinner you attempted probably earned you some points too!
Hope your fatigue and shortness of breath gets better soon. Hang in there and keep smiling. We're all in this together.
Linda

I went to the Auckland Hospital for consultation about my newly diagnosed AML. They are limited here in terms of treatment and primarily offer aggressive chemo. He is surprised that I haven't been hit with extreme symptoms yet and suggests that I see what is on offer when I visit California later this month. I would prefer a less toxic approach and wonder about Vidaza. Anyone on that? I can't get it here in NZ and would have to pay for it in the US if I can get it. I have no idea what is involved.
Any other drugs come to mind?
Best wishes
Jon