Sorry to hear about your throat and energy levels. I love what you say about the Lord using you snong. If you get a chance listen Laura Story's song Grace http://www.youtube.com/watch?v=syJuAmob4Mc It goes in part -- How many times will you pick me up when I keep on letting you down and He answers As long as your seeking my face you'll walk in my daily suggicient grace. That gets me through an awful lot of this junk.

Last week was the third week after the last transfusion and I was pretty well down - not imoblile down just not well like not feeling very good. It's just part of the deal. I get more frustrated than depressed.

I'm really sorry about your cruise Becky but on the other hand glad to see that Birdmom is keeping the travel industry in business for us LOL. You keep on hangin in there. I've been running on HGB in the upper 7's to upper 8's for a long time now. The transfusion last anywhere from 2-5 weeks. Unless something really gets out of whack the doc lets me choose, based on my symptoms, when to get one. Like the last one I was ready for one and the blood test showed hgb in the lower 8's which they usually wait until thier in the 7's but I got it anyhow.

We just need to hang in there. I"m a walking bottle of germX and ready to explain when I use it after shaking someones hand. Every minute we get is precious whether we're healthy or not so even if you don't feel good make some part of it good.

Keep on smiling everyone. God Bless and have a great week.

Mike

Hi everyone! I too have been supporting the travel industry, just got back from a wonderful Caribbean cruise. I'm thankful to have been able to cruise and so sorry to hear you have to postpone yours, Becky Jean. We were on the Carnival Conquest if anyone saw it in the news (sad news I won't repeat here). I ziplined in Jamaica, 1600 feet, and held the stingrays in Grand Caymen. Saw a nice hummer in Jamaica, but couldn't quite get his picture!

We saw so many people on our cruise in wheel chairs, with oxygen, etc. Its too bad this stupid MDS causes the immune system to be so bad. I would LOVE to take Mom on another cruise. I'm walking proof though cruises aren't a good idea for you guys; we got in yesterday and my hubby and I are both extremely sick today with bad colds. And, I washed my hands and used the GermX a lot!

Mom isn't doing too well; she's at Dr. today and her counts are only 7! 7 platelets and 7 RBC; the white count is up over 3 though so they're going to attempt chemo tomorrow after she gets blood and platelets today. The Doc talked to us today about her DNR order, so it was a real downer day. :(

We are planning an 89th bday in 2 weeks for Mom and have family coming in from Minn. to celebrate on Oct. 15. My daughter will be married that weekend, so we thought why not celebrate Mom's "pre 90th" year!

Birdmom, yes, Mom and I live in the Dallas area and I do drive a motorcycle, a Yamaha 650 and my 64 yr. old husband, a Harley. I think its great your daughter has your husband's old Harley. I hope she can restore it someday.

You guys are all so inspirational in your faith. I read an old book on my cruise, "Mere Christianity" by CS Lewis. I'm humbled to read how much faith you all have here. God Bless and here's hoping you all have a great week!

hey guys! I am still around. like a bad penny I keep turning up lol. good to see you all here with us too! guess I just really needed to stop in today. much love to you all! Trust in the Lord! He is what keeps me going!

We did manage a cruise to Alaska with our daughter and spouse in July and my hubby worried the entire trip about me. But we all did fine. We signed up for our Caribbean trip in March. I'm okay with it now but come February with cold and snow is when it will kick in that I'm missing the two weeks. Never been to the Caribbean but have been to Hawaii,China, Spain, Italy & Greece. We love Italy and returned several times. I'd like to return to Croatia and a Russian River Cruise but think we'll be sticking closer to home for awhile.

Sandra: Hope you are feeling better.

Motorcyclegma: I know you feel so helpless when you see your mom in her condition. But I know Mom will be strong and have a fun celebration. Hope you and hubby are feeling better.

Mike: Thanks for the info. We'll see what the blood counts are next week.

Question: I know this may sound silly, but even with 6 months of chemo for breast cancer I never had a port put in. I think it's common practice today as that was 16 years ago. I'm sure you have one Mike, but how about the rest of you. I'm thinking with the new regiment of 5 days a week that will be necessary.

Birdmom have fun on your trips. Hopefully we'll be able to travel to Alabama in Nov for Thanksgiving to see our two great grands. We also lived in Tonopah for two years but that was over 50 years ago and I'm sure a lot of changes since then.

Stay well & Have a great week everyone.

Happy Tuesday Everybody!
It was great to see so many postings this morning.
Mike, I wanted to thank you for posting the Laura Story video Grace. I just loved it. What an inspiration!
Sounds like there has been alot of travel going on.
Motorcyclegma hope you and your hubby get feeling better. No fun. I think it is wonderful that you are having a birthday party for your Mom. I have learned with losing both of my parents that you have to spend as much time with them as possible. I hope your party is a great success!
i do plan to go the the pharmacy and get some B6, hopefully it will help with the leg cramps.
Becky Jean you are in my prayers with all your treatment and keep the faith that you will feel better soon.
There are days when I just feel bad but I know after reading these posts that I am so blessed at this point in my life to be in the low risk wait & watch. The scary part is the uncertainity of this disease.
Have a great day everybody!
Janet

Hey Posh great to hear from you. We hope your doing fantastic and keep on knowing your in our thoughts and prayers.

Becky I had so many IVs put in that the viens were not easily letting them do it anymore. The viens were hard to find and whent they put one in and we would leave it there three or four days wrapping it up for showers and stuff. I had already had close to a hundred daily chemo treatments (the 5 days every 4-5 weeks schedule) along with becoming transfusion dependent meaning every 2-5 weeks running in for those. The port is great and the actually used it for a chemo infusion the same day they did the surgery. We had one problem with it leaking once because they used to large a needle so I just make sure they are using the right one, the plug it in, put in whatever I need, unplug and make sure any bleeding has stopped and off I go. Way better than the in the arm IVs. I wish I had done it much sooner.

Janet your right. The most frustrating thing for me about the MDS is knowing we're one cold germ away from being in serious trouble. I don't hide in the house all the time but use a lot of care and germX when I'm out. We always have Wipe ease packets for shopping carts, use the GermX after contacting doors handles, menus (determined to be one of the worst sources of germs out there), etc., trying to do what we can to keep this MDS being the final cause not some stupid germ. Hang in there cause we can't just sit and worry about it.

Have a great week everyone. God Bless and make someone besides me smile -- you'll love the smiles you get back.

Mike

Hi all, I'm feeling a bit better -- trying to decide whether to venture out to my 12 step support group tonight. Don't know if I'm contagious or not. My DH & I did a joint visit to Dr. yesterday just to be sure we didn't have Swine flu or something. No strep, no flu, just a standard "virus" whatever that means. I think my fever is gone now so probably back to work tomorrow.

Mom is having her chemo and doing fine so far. Those transfusions sure make a difference; her numbers went from 7 to 10 and 60 on the platelets overnight!

Mike, how often do you have your Sunoco refuels? I'm wondering how often Mom can have them and not get iron overload. Doc hasn't mentioned anything about iron overload, I guess I need to ask.

Becky Jean, your past travel to Italy, Greece and Spain sounds wonderful. I hope you have beautiful pictures & memories to help you remember. Last yr., we went to the Meditterannean and I made two HUGE albums. I'm not a scrapbooker, but I did one for that once in a lifetime trip. We even made it to see the pyramids before all that middle east chaos.

Mom says I'm living a pretty good life; well I'm trying to savor the moments because I am married to an older husband & you never know. I save money every mo. to travel rather than having a fancy car.

Regarding the port, Mom got one right away because her bruising and anemia was so bad, they didn't want to have to keep sticking her with the needles. It's been a great thing for the transfusions, the chemo, even steroids are given to her by port. She was able to swim with it this summer in our pools, no problem. And, no big bruises. She has enough of those already!

Thanks for your words of encouragement and letting me hang out here. BTW, my name is Cindi so you don't have to type that long MotorcycleGma. Take Care, Cindi

Hey there Cindi, First thanks for the name and I would suggest that all of us sign our names at the end of our posts to make it easier for the chemo fog folks and those that are just naturally in a fog LOL.

As for my transfusions I think the doc would like me to get them more often but let's me determine when I need them based on how I feel. Usually when I ask, as I did yesterday and go in for the lab work the HGB is in the upper 7's lower 8's. I actually felt better than usual but Mama said I was getting green behind the gill and we have the gang coming so I'm getting one tomorrow. The hgb was at 7.4 and hct at 21% or so which is as low as I've seen it. Plts were at 37. The iron overload comes it somewhere after 50 to 60 units is my understanding. They did a check on it last time and I was a bit less than 50% of any concern

Hope that helps

Mike

Cindi, glad that u and your husband are feeling better. I went and had two more units of blood today. Thanks Mike, I was wondering how much blood one gets before we over iron ourselves. I have received 12 units so far....since the end of June. Still waiting for the aresnep to take effect. Love and hugs to you all. Sandra

Mike thanks. I am doing pretty good actually. coming up on 5 months already. sure don't seem like it has been that long. I check in frequently though even though I don't post as much. luv all you guys and I do want to thank you all for all the support.

Posh, glad to hear from you, loyal friend. Everyone seems to be hanging in there, including me. My Hgb was down again slightly, 9.2. I'm wondering if the Aranesp is losing its effectiveness.

I'm off today for nearly a week, annual reunion with OLD girlfriends.

Good idea on signing our real names.

Sharon

Cindi: You are so right that transfusions really do make a difference, I'm just over 3 weeks and feeling good,however I know it is just a short fix as the blood levels have already started to drop. I'll see what happens next week blood test.

Iron overload is a big concern for me as I already have Hemochromatosis. A gene from both my mother and father. I finally have it under control with Exjade and reduce to one month off and then the iron goes up I go on it for a month and it drops below 50. However, with the 2 units I just received the ferritin level from last week it was 263 up from 88 before the transfusion. This was back to 2009 levels. There doesn't seem to be a happy medium.

We also love the Mediterranean. Our 50th Anniversary cruise from Venice included the Greek Islands of Rhodes, Mykonos & Santorini. Our stop at Dubrovnik was not long enough.

Thanks Mike for the info on the port, I can see that's the way to go as I too have trouble with veins as I only have one arm to use.

Stay well and have a great weekend.

I have to say that as much blood as Dad got in the year of his battle he never got the iron overload thank goodness! hard to believe it has been 5 months already! where does the time go? A friend of mine lost his wife a couple of weeks ago to a form of mds called mylofibrosis. she quickly turned into leukemia and only lasted a couple of weeks. really sad for him. I hate this stuff so much. still praying for a cure! much love and peace to you all!

Elaine

Elaine,

Thank you for the reasurance of how much blood I am getting. So, far this week has been a good week. I went back to yoga and today went to my Breast Friends support group. Even went and got some groceries. This afternoon had a headache and my knees just ached. I was wondering if that is the arensesp working...who knows? See my doctor on Monday.
Hugs to all. Sandra

HI Elaine and all

It was great to hear from you. I'm sorry about your friend but know that he has a source of strength in you from all that you know and have been through. There is no answer as to "Why" with this junk but until they find that answer and the solution, we do have each other. One of God's greatest creations is friends and it's great to have so many here.

I had some hope on the soluton of combining WBC with HIV but my doc says that form of the disease/leukimia has an actual target cell that they could aim at where what we have does not. It will be our turn soon so everyone keep the faith.

I had a blood transfusion last week, was supposed to have chemo th is week but the ole WBC was still at 1.3 so we put it off until next week. I tried to talk him into waiting another 5 or 6 weeks but got nowhere with that tactict LOL LOL.

Have a great week everyone. Remeber God put our eyes on the front of our head because He has our back and our past. Keep your eyes looking ahead, smile every chance you get and make every minute count. We have two choices with this junk. One is to live with it on our terms, defeating it's demands on us or we can give in to it and waste a lot of really precious moments in our lives.

God Bless all,
Mike