Hello, my beloved leaky boat crew! I'm back from my Panama Canal cruise, which I enjoyed immensely. Two highlights were being in a pool with a trained sea lion--such fun!--and feeding, even kissing, stingrays. Of course, Steve Irwin was in all our minds.

Speaking of Steve, thank you, Rachael, for the great news about the genetic defect. I was told that MDS was not genetic, but I never believed it. Hard to when my dad died of it at 75. Sheesh, I'm 72 now, so I should outlast that age. Our new member, Cat, must feel the same way. Cat, welcome! Sounds like you were late in being diagnosed. Tell us how it finally came about.

We have some exciting times coming up in January for some of our crew, don't we? But I'm extremely worried about Mike. Does anyone know how we can get in touch with his wife?

Posh, I read something yesterday that said "don't keep the key to your happiness in someone else's pocket." I thought of you because you indicated that you are sliding into depression. I know that you miss your loved ones, but life is definitely for the living.

Promise me that you won't let this happen (been there, done that). Get help before it becomes full-blown, especially during holidays. I'm on a daily dose of Prozac (it's been very successful in my case), & will be for the rest of my life as a preventive measure. I seem to lack seratonin or whatever it is. Sharon

Apologies! I didn't see the very latest posts before I posted. Rachael, I figured out what you meant after I read the article. Capn Chris would be proud of you for getting post #1600.

Cat, I too will be passing this info to my sibs & cousins. I'd already warned them to be very aware of the possibility. There is another genetic defect in my paternal line that caused my dad's brother to die from a bone marrow disease, which I think must be closely related.

Sharon I am so glad you had a wonderful time on your cruise! you go girl! I am doing ok. been pretty busy the last week or so so I don't have time to sit around moping at the moment. both my daughter and I have to have surgery it seems so we are pretty busy. I have a bump knee and shoulder. ugh!

it is interesting about the genetic thing. I do get quarterly blood tests since I am diabetic so they watch me pretty close. I am on edge about the whole cancer thing anyway with both parents passing from cancer. another ugh!

Hope everyone has a blessed holiday season!

Hi Birdmom,
Panama Canal cruise huh.. I want to do that also. My husband can't figure out why. I really don't know myself I just think it would be great. He would rather be fishing and scub diving. Up until 7 years ago we did that at least once or twice a year. I have a sister in Key West Fl. and she has a boat. So I was very blessed to be able to do that kind of thing.
Thank you for asking how I was diagnosed. I think I explained in a earlie post. If I didn't let me know and I will explain. But since I am new here how did you become diagnosed?
Hope everyone is feeling well and not getting to stressed that Christmas is 10 days away.
Untill later. Cat
ps I find this site very conforting. It is good to know there are other people struggling like I am to understand...

I also wanted to pass along this site to everyone. I got tons of great information from these people. Also the doctors a round the world that are specialist in MDS. http://www.mds-foundation.org/
Everyone probably knows about it already but here it is again.

CatJohnson: Welcome, my name is Sandra and I was diagnosis in 2006 with MDS deletion 5q...I was on Revilmid until this June when it stopped working and only blood transfusions would keep my hemoglobin up. It was a rough summer. Thanks, Aussie and Cat for the sites. My mother had colon cancer/lung cancer and died at 71.
I was told here is an consumption that it can come on from radiation which I received in 2002 for breast cancer. I now have cancer and waiting for a my bone marrow transplant. The date dear friends have changed to January 17, 2012. My brother is a match. Sharon: glad to hear that you had a good cruise. That is great! Did you get off and see any of Panama?
Becky: glad that you are holding in there.
I just had my second round of chemo and doing good.
Well, I best go to bed....hugs and blessings to you all.

Congratulation the BMT. I bet this will feel like a long month for you. I read a good book called "There is no place like HOPE" by Vickie Girard. She had a BMT and she talked about being in the hospital for that long time. She said bring things from home to make the room your own. How old is your brother? I was told that my sister is to old 64 and since she has had 3 children that is 3 strikes against her. I am on Vidaza but my counts aren't goin up. I am starting Vidaza again on the 28 or there abouts. With the holidays the chemo is going to be tricky timing it correctly. Please keep us posted as to what is happening.

Cat: My brother is 60, they tested my sister who is 68, my sister who is 73, they would not test. Yes, will keep you all posted. Hugs...Sandra

Hi everyone,

My last Hgb count was 9.3, so I'm hanging in there. Unfortunately, my bronchitis has taken a turn for the worse, so I'm seeing the nurse tomorrow, probably will have another round of antibiotics. I hate to whine, but it's been close to 5 weeks now, & I'm wearing out.

Christmas will be very quiet this year, which is fine with both of us. Early in January we'll go see the grandbaby. It's been 3 months or more, so I'm anxious. But I'd like to be reasonably well first.

Sandra, we weren't permitted to leave the ship as it went thru the Panama locks. I ordered a DVD of the cruise, & tried to watch it this morning. Naturally, it's defective, so I've only seen video of the first two days! Don't know yet if they can replace it, or will refund my money.

Birdmom, Your hgb is hanging in there. I had two more units of blood on Tues. because my hgb was 6.9 and I have been tired since...got some tired blood from someone. I am constipated also which doesn't help. I am still in good spirits and things are moving on...hugs and Merry Christmas. Sandra

Birdmom,
hope you get feeling better. I have had a sinus infection since before Thanksgiving and have had 2 rounds of antibiotics with a steriod pack. My second round ended this past Sunday and I am still coughing and at times having a hard time breathing. Needless to say it has taken my energy level down. I love the holidays but this year it has been a struggle trying to get everything done.
Sandra,
Hope you get your energy up for this weekend!!

I pray that everyone with this crazy disease and all those wonderful caregivers out there have a very Merry Christmas & Happy New Year! Praying for more medical advances to treat this disease regardless what stage we may be at!
Merry Christmas to all!!!

I just want to wish everyone a very Merry Christmas. Mike if you are reading I am wishing you well!

Hi to the Leaky Boat Crew,

Talk about Silent Night! It's been Silent Week for this group. Hopefully that means we're all happily busy with family & friends for the holidays.

My own Christmas was so low-key it barely registered, but with another round of antibiotics in process, I'm once again among the living.

I want to wish everyone a very happy New Year, and especially good health in 2012. Sharon

Hello,,,birdmom, glad that you are feeling better. Went to Ann Arbor for two days this week for test and more test. Go back again next week to see the gyn and to have a bmb. My husband received $ from his mother for Christmas and went out and purchased me a used laptop and I just love it. It is not new, but serves the purpose.
When I was at the U of M ...I got a tour of the floor I will be on at the new woman and Child Mott hospital. It is beautiful....the room and floor is filtered, so I can take walks in the hallway. Visitors room has commputers and refrig, tables to play games and a t.v. My room will have a small reftrig. a loung chair where my husband will be sleeping. They have a place where he can shower and a laundry room. Will keep you all posted. hugs...Sandra

Sandra: If you have to go through this it sounds like you have a nice place and so glad you have a computer, doesn't need to be new
just one that works. I ended up in the Hospital in Alabama. Having a
second unit of blood while typing this. I was admitted 12/27 with HGB of 8.8 and two days later 7.7 which was really weird.
They were only giving me 1 unit, but I had a script with me from GW doc for 2 units.

It gets complicated as to how and why I got here but will have to
tell you another time. Not related toMDS.Hugs to all.