Dearest Chris - HAPPY HAPPY BIRTHDAY.

Rachael - we loved the drawing :)

Chris - what's for dinner, something special?

We hope everyone is enjoying the Memorial Day weekend!

Gayle & Lou

Happy Birthday Chris I hope you had a good one and that there are many many more to come.

Eileen welcome aboard the leaky boat I do hope we can be of some assistance and that there are smoother waters ahead.

Rachael what a brilliant drawing, it has really made me smile and serves well to remind us that we are in many ways in this together. (I also loved the twins story what a brilliant image).

J we are all here for you. I hope that you can find your own path through this and that the BMT allows you to find a new starting point upon which to build.

Back in work today and although I love my job it has made the holiday feel like a very distant (but pleasant memory).

Ally

Dear Al;l,

A very happy, and very boozy party in the sun on Sunday. Monday I felt very old.

Many thankls to all who sent their birthday wishes, all of which I very much appreciate.

Gayle, did'nt you tell me you had bought your flights. What happened, couldn't you spoon Lou on to the plane, or did yoy fall off?

I am well, thank Godd.

Love
Chris.

Hi Leaky Boat Partners,

Just got home from the graduation party for Leadership Bend Class of 2010. We had a great evening.

Chris - Lou's a bit under the weather. His diabetes is out of control and he's having fits...he doesn't like not feeling well, but then again...who does? His blood sugar was 478 two hours after dinner. He saw his doctor today and was put on a new medication in addition to his Actos. He's worried...does anyone else have diabetes that's out of control? His numbers just started going crazy in the last two weeks.

We'd appreciate any input you all might be able to offer. MDS is one thing, but out of control diabetes is scary. It's affecting his vision, energy, strength, etc. His hemoglobin is 10.7...yippee but what do we do about the diabetes?

Gayle & Lou

Gayle,
Sorry to hear about Lou, I have no experience or knowledge of Diabetes. Try Google, they seem to have all the answers.

Good luck.

Gayle, I also have little experience with diabetes. Does Lou take shots? Aside from googling to learn more, his Dr is certainly the best source. I hope the Dr knows about his MDS. I don't know what connection it would have, but ya never know.

Cap'n Chris, no wonder you felt old yesterday. No, it wasn't the boozy party, it was the fact that you were a day over 75!

Yus, Sharon, but I DO NOT FEEL IT.
chris

Hi everyone!

Gayle, I so sorry to hear about Lou's struggles. Hang in there, hope they have some answers for you soon.

Thanks all for your postiveness towards my BMT! Unfortunately, I am needing to find some more support before they can get started. And I didn't think to tell the Doc about you guys! However, you may need to fly in to Melbourne and stay a few months. What do you think? That would be awesome!

Transplant is much bigger than I thought. (Not sure what I thought really.) I need someone to care for me. That's going to be different. Believe it or not, I've been caring for people for most of my life and that's why my life has fallen in a heap over the last little while. My mind, and body is tired. And it's hard to accept now that the only one available to care for me is my Mum - my Dad can go into care for a little while. So maybe back to Brisbane after all. But I will see. So much to think about...

Thanks for listening. xx Jules

Dear Jules,

I reckon Brisbane is the place for you. Its a city I loved, and I even tolerated the concrete of the Gold Coast.

Today Friday, one of my brood is arriving from Dubai, and we are off to South Devon for 4 days at the seaside, in my spiritual home!

So don't expect anything until Tuesday or Weds. Will have no internet access.
Chris.

Hi all,

Just back from doc. WBC up to 2.4 all the rest about same as couple of weeks ago which were in acceptable levels though low. Talked about a description of a level of MDS and he said that while he does not like using the 1-4 descritor levels most folk use just because one thing like the blasts can kick it out of reality. He said the best description would be an upper low level or low intermediate level. That means everything is staying about the same as a couple of years ago which is cool.

Have Dacogen chemo each day next week then wait 5 weeks to do it again.

Always up for encouraging news. Have a great weekend everyone. Do something for yourselves and have some fun.

Mike

I made it back to New Zealand from long flights to Greece for business and Los Angeles to check out my 15 month old grandson. The Neupogen probably did its job and kept the Neutrophils at survival levals. The long flights were not a lot of fun, especially one where I had a tiny middle seat next to a sneezing and coughing teenager.
I'm starting to get some symptoms now, but I'm not sure if it is the MDS or the med. Mainly tired and run down, plus some shivering and such. It was hard to fake alertness at ten hour meetings and my business partner had to climb every hill we could find on a couple of Greek islands. Gasp!
I'm going to arrange for the bone marrow analysis now so I know what I'm dealing with, even though the NZ system doesn't support the MDS meds.
Best to all.
Jon

Sorry....I just read my post above and didn't mean for it to be so whiney. Greece was beautiful. Delightful people and incredible sights. Great meals and great company. A little trouble with symptoms, but held my own. Seeing the grandson in LA was great too.
Cheers and best to all.
Jon

Jon I'd say don't worry a bit about "whining" here. Most uf us don"t want to "feel bad" in our conversations with our friends and loved ones. That is why this group is great because we can talk about the things that are real in lives with those who are going throuh it too and can understand.

I am a very positive person but have laid some stuff on the group now and then. I suspect next Friday after a week of chemo I'll be in the mood to whine LOL>

Have a great weekend and remember we're all friends here.

Mike

Hello everyone, hope all is well. Glad to see all of the activity we have on the forum. I have been a little busy as my eleven year old nephew is visiting me for the summer. Whew!! He has energy to spare and I have very little but we are making it. It is a little more taxing than I imagined. No new blood counts as my visit is not until next week.

Happy belated birthday to Capn Chris.

I viewed the photo and it is great. You are very talented Rachel.

Sending warm wishes and good health everyone's way.

LaDawn

It is a Godsend that I found this site. My husband was diagnosed May 26, 2010 with MDS (RCMD INT-1) and, like I'm sure y'all have all done, I've been trying to learn as much as possible about this disease. His doctor, unfortunately, put a number on his prognosis and my husband has been stuck on that. But after reading all your post (well, I haven't read all 680 something yet - but I'll get there) I feel so much better. I'm having problems grasping it all and still have that sick feeling in my stomach and feeling like a 10,000 lb. gorilla is sitting on my chest but I have to be the strong one for him and so I keep that smile on my face and hope to transfer a positive attitude to my husband.
We are going for a second opinion on Friday even though we have confidence in his doctor, a second opinion never hurts.
He did well with his first round of Vidaza. They gave him a nausea medication along with the Vidaza three of the days. The only thing he complained of was fatigue, of course, and his joints hurting, which the PA says is not usually a side effect.
Again, I'm so thankful to have found all of you!
God bless,
Linda