Buffalo and beyond - update madubois63

madubois63 · 08-10-2006, 07:23 PM

Got back a little while ago - long day!!! My dear friend Liz is an absolute angel sent from God. We wore matching sleeves (thank you sweetie). She, to keep her lymphodema in check and me from ever getting it (un-pressurized planes). I picked Liz up at 6:30 a.m. (Ugh), and we were in the air an hour later. Our first pilot, Carol, flew us to Ithaca (couldn't make the whole trip for personal reasons) in her SMALL 4 passenger plane. We had great weather and great conversation. Carol took up flying because of menopause - ha ha!!! I knew I loved her in that moment!! We met Dave in Ithaca and pretty much got up in the air immediately. His plane was smaller...not sure if we were in the plane or wearing it!! Once we got to Buffalo International, the hospital sent a car for us. We had time for lunch - ate in the hospital cafeteria. I HOPE the patient food is half as good as the cafeteria food. Then I meet with the nurses, a financial counselor (who was VERY happy I have Medicare/Medicaid) and then the doctor. Both Liz and I liked him very much. The actual search is now on for the donor. I had the "preliminary" search done that you all know about (free), and now they do a more intense screening out of the possible matches. This is where the costs begin. The ideal out of my potential donors would be a young, healthy female that hasn't been pregnant yet. The transplant could be done in 6 - 8 weeks. I'll have to be in the hospital for 1 - 2 months (ugh). They usually move the patients to an apartment in the area after that and watch them carefully for a total of 100 days. There is a possible chance of getting graft verses host disease (rejection), and this can be really serious. It usually happens within the 100 days. My new, new (transplant) doctor knows my old, new doctor (leukemia) very well, and he will let me come home to be watched for the 100 days and thereafter. I am thrilled about that!!!! I still have to do the "consolidation" (second round of chemo to keep me in remission until the transplant). I do that here in the hospital near me. I am scheduled to go in and start chemo on Tuesday - ugh. That chemo will last five days (24 hours a day except for shower time), and I may be out of the hospital within 2 weeks this time (hopefully). If all goes as planned (and you know it won't), I hope to be home and done with all this (transplant) for Christmas. Now that would be a gift!!! Anyway, I have mixed emotions but mostly feel pretty good about the whole thing. we finished up with the vampire (phlebotomist), and then started the next part of the adventure...a car took us to our return pilot's business. Bob then had a friend drive us all to a teeny tiny runway where his plane was. It was getting a little cloudy, but take off was great. I sat in the back, and Liz sat in the co-pilots seat. He explained everything to us, and Liz even took the wheel for a bit. She had us on our side and then panicked! we hit some rain and flew through some pretty intense clouds (remember, this was a 4 seater). All in all, it was a really great flight. we flew right over my house (I got all excited). Angel Flight America was AMAZING in coordinating everything, and the pilots are just AMAZING for donating their planes, time, gas and fees!!! Please spread the word about this FANTASTIC organization...I took pictures and will post them tomorrow after my daughter downloads them for me. Sorry this is so long. I wanted to write this just once and send it out to family and post on the boards (your family too). I'm exhausted and going to bed now - love you all!!!!

chrisy · 08-10-2006, 09:26 PM

Wow Mary anne, what a wild ride! You had me on the edge of my seat - and rooting for you all the way! It is so great that you will be able to have your "100 days" closer to home. Very thankful for that. I'll keep praying that things continue to go well for you, that you are able to keep fighting AND keep that great spirit as things move forward. Thanks so much for posting in such detail - you are such an inspiration.

Take care
Chris

RhondaH · 08-11-2006, 02:18 AM

I will pray that things will continue to go well for you. Take care and God bless.

Rhonda

08-11-2006, 04:45 AM

Best of luck honey...I'll be thinking about you and praying things go well for you! Love, Janet

Sheila · 08-11-2006, 05:12 AM

Maryanne
Your determination and sense of adventure never ceases to amaze me...I would have been grabbing for the barf bag when your friend was flying....I hope they find the donor soon and that your next round of chemo is a breeze. I'd be a donor myself for you if I was a match....but I'm "old" and then there are those little cancer cells....maybe a young donor will fill you with even more youth and vitality....even though you have plenty!
Prayers and Hugs

RobinP · 08-11-2006, 05:26 AM

Thanks for the update Maryanne, I 've been wondering about you lately. You are such an inspiration of determination. I pray things go VERY well in Buffalo. PS. Funny you pasted through Ithaca, I live 40 minutes south of it! And I was in Buffalo too at the Roswell Park Cancer Center for at least a small part of my care with Dr. Levine.

Barbara H. · 08-11-2006, 06:03 AM

Hi Maryann,
I wish you all the best in your next phase of your treatment. I was quite impressed with your story and your flight. Thanks for sharing.
Best wishes,
Barbara H.

MJo · 08-11-2006, 07:57 AM

Young healthy donor that hasn't been pregnant yet... That leaves most of us out. It also leaves out Angelina Jolie. Wouldn't you just love the lips. MJO

tousled1 · 08-11-2006, 08:47 AM

Maryann,

You should be a writer! I enjoy reading all your posts. Hopefully, you will have a donor soon. You're in my thoughts and prayers.

08-11-2006, 09:16 AM

Maryann;

Way to go!! Thanks for keeping us informed. I'm thinking of you and wishing you all the best. Let us know if there is anything we can do.

Best regards,

Cathy

AlaskaAngel · 08-11-2006, 10:14 AM

Nice post, Maryann, and I'm glad such great people were there to lend a plane and their time to get you there and back safely! Where I live, for any travel we either boat or plane or don't get there at all.. I'm glad you enjoyed that part of your experience so much.

AlaskaAngel

karenann · 08-11-2006, 10:36 AM

Maryanne,

You have a strong spirit and a beautiful soul. Both will see you through this hard time.

Love, hugs and prayers.

Karen

IRENE FROM TAMPA · 08-11-2006, 12:42 PM

going through everything you are going through and still have your sense of humor. I can just feel it come through in your post'. This is amazing and that is why you are a true survivor. Your good outlook and spirit will keep you strong.

My daughter has been on the bone marrow doner registry for some time now but has never been contacted. She has had 3 children and is 39 though. I think that it is a wonderful thing to try to help someone else in this way.

I wish you all of the luck in the world and pray someone comes your way soon.

Chelee · 08-11-2006, 12:56 PM

MaryAnn, Your trip sounds pretty exciting actually. Your one tough lady and one I really admire....a TRUE inspriration to us all. (And we all need that!) I just LOVE how you keep such a great sense of humor. I about died laughing about that second plane you were in. You said your weren't sure if you were in it or WEARING IT. LOL The things you come up with...you missed your calling...you should of been a comedian. hahaha (But its not to late...give it some thought.) :-)

Anyway, you hang in there. I know all of this isn't easy...but if anyone can get through this, YOU CAN. No doubt in my mind. I will keep you in my thoughts and prayers!

Sending warm healing thoughts!

Chelee

madubois63 · 08-11-2006, 05:51 PM

Thanks for all the replies - it does my heart so good to hear from you all!!! I want to reply to everyone having a tough time. It just breaks my heart. I wish we could cure this horrible disease...

Someone asked me if I will be leaving the bc boards because the leukemia puts me in a new catagory. I just about freaked!! Leave you guys??? I don't think so. 90% of my best information and 110% of my support and prayers came from the bc boards. Do you know there is nothing out there like this board for Leukemia. I belong to one "group." but it is an e-mail type of thing - very strange! We have it so lucky to have each other!!!
..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

Lolly · 08-11-2006, 09:24 PM

Maryanne, you are amazing! Rest up now, and we'll keep the prayers going for a donor and try to have you home by Christmas, as wished

<3 Lolly

Jean · 08-11-2006, 10:31 PM

Maryanne,
You are one tough cookie! I am so proud of you!

I continue to pray my special prayer for you and I know for sure that everything is going to move forward. Start making your Christmas list
Santa is coming to your house for sure!

Fondly,
jean