Now, I'm all of a sudden nervous.......

I found out some pretty exciting news today. :) But for some reason, all it has done is make me kinda nervous. That's weird. I am going to say that it's because it's hard to go from "hurry up and wait" to, ok, it is really happening. So, here's the news:
I spoke with my Donor Search Coordinator this morning. Originally I was just curious as to what stage the search was, but she had much more information than I could have hoped.  Turns out that they have found 3 exact matches through the National Donor Marrow Program. EXACT matches. Apparently that is rare on the first round. The way it usually works is they can find "potential matches" people that match anywhere between 6-9 of the genetic points. Then, they contact those people and have them do blood tests and continue the testing to see if they will match all 10 of the required points. So, to find 1 EXACT match right off is amazing, but 3? My coordinator was very excited for me. :)
So, now, the Attending Physician of the search lab will double check the findings, make sure that these 3 really are EXACT matches currently, then write a letter to Dr. Z over at MSTI. Once Dr. Z gives his go ahead on moving forward toward a transplant, I will get a phone call and actually schedule my transplant! Eeeek! I could potentially have the DATE of my transplant on paper in the next couple weeks. Granted, it could still be a couple months before the actual transplant, but just to have an actual date will be so crazy! wow.
So, once the go-ahead is given, the donors will be contacted and re-tested. There is a possibility that something has changed. Whether that be willingness to donate or they themselves may have contracted a disease of some kind. My coordinator says that it is highly unlikely that all 3 will have problems, so that's a good sign. They have located 8 potential matches as well if we need to go that route, but it's looking good for the current matches. :) Yay. Once it is determined that the 3 matches are still "blood healthy" they will have to go through a rigorous health screening to make sure that they will be able to handle the drugs and the stress of donating marrow. and then...... and then....... guess what????? Then they will give me their marrow.... yay.
I can't believe how quickly the outlook can change. I was just thinking LAST NIGHT that I may have to just deal with the fact that it could be a LONG time before I get any movement forward in this process.... I was even worried about not having enough information to put on my blog to not bore all of YOU! No really, I thought that. Well, apparently I will continue to have new info moving forward. So, here's goes nothing. :)

Say 8!!!!!!! - Brian Regan

Yes yes, Morphine. :) That's the stuff.... And lo and behold, it is now the FIFTH drug in my ever growing daily cocktail.... It's a tiny pill and purple to boot. :)
This last Thursday my doctor and I had a long chat about my "malfunction junction" and decided that between the Norco, Aleve and Baby Aspirin, yes Baby Aspirin, that my pain was just having too much of a heyday. So.... Morphine it is. Um.... can we just say... wow. Yah... I had no idea really how much pain I was not supposed to be feeling until I started in on the Morphine. I could actually sleep through the night without having to move every three seconds or get up and take Norco every couple hours. MIRACLE! :) There have been a couple rough spots of being sick and getting to know my sister's bathroom REALLY well, but other than that, it's been SO much better than when I was popping Norco every three hours.... wow.
I haven't ever been one to just pop a pill for every little thing, ya know, just suck it up and tough it out. I do think, however, that I'm growing more and more grateful for the medicinal advances that have been made. I also think I'm becoming more and more aware that I am NOT Wonder Woman. Maybe She-Ra, but NOT wonder woman. :) This has been one of the more difficult things to process in this whole adventure. Dealing with my weaknesses. WHAT? Yes, I have weaknesses, don't tell anyone. No, I have had to face up to the fact that even though in the past I have been able to rely only on myself and make it through, ain't gonna happen anymore. I AM grateful for all of the support I have and all of the encouragement. It means a lot, even as an adult, to know that someone is rooting for us. :)
This reminds me... the other day I was in a public restroom, when I hear this tiny child's voice. "Good job mommy, you went to the potty... do you get a chocolate now?" I mean really, who doesn't want to be rewarded or cheered on right? :) I loved it. I had to leave before I started guffawing. :)
Anyway, Morphine is the update. I'm actually doing pretty good otherwise. Crossing my fingers that this match search won't take too much longer, but knowing that the schedule is in someone else's hands. Hands that I trust. :) That's all I need to know right? Right. Peace out boys scouts and thanks for your continued support and laughter. :) Love it.

I got the best news yesterday!!!!!

Ok, so maybe...just MAYBE, the BEST news would have been that a 35 year old Multi-Millionaire wanted to give me his bone marrow AND marry me because he thinks I'm "beautiful on the inside". Yes, THAT would have been the BEST news, but alas......OK, so the BEST news from yesterday was this....
I can live with my doggy and meows post transplant. Woooooot! or should I say WOOOOOOOF! :) hee hee...
Now, some of you may think I have lost it. Yes, yes I have, but nonetheless, this news was ever so exciting to me.  When this whole "malfunction junction" started going down, I was told that there was a HIGH possibility that I will not be able to live around animals after my transplant. Instant sadness. How much do I heart my animals. YES. So, on a whim, I emailed my Seattle docca and asked. The only stipulation is they DON'T want me changing a litter box... No problem. :) Sorry mom. Anyhooosa... I am el-stoked. :)(That is stoked in Spanish right?) :/
Then yesterday, in my exuberance and joy decided that going with my sister and her chillen' to the track would be a great idea. Get outside a little, do a little walking. My niece and nephew thought I was a quote unquote "sucka" for being too much a wanny to jog with them, but I decided that my Shpleen bouncing up and down in my gut, wouldn't be the most pleasant thing. So, walking it was. I totally walked 3/4 of a mile... Go me... HA HA... ONLY 3/4 of a mile and I was THROWN into old woman syndrome. Stiff back, stick knees, couldn't move without bending a bit. I felt like saying "Eh sonny?" a few times. All in all though, I THINK that moving is a good thing for me. It's just trying to find a balance between moving and NOT. do one or the other two much.. no good. :(
No news on the donor front... unfortunately, but hey, they really need to call that one guy from the first line above... I'm mean really, what are they waiting for. :)
One thing that I need to put out there. I am in need of a laptop. (Yay for Dani, jumping into the 20th Century. (and yes, I MEANT to put 20th... don't expect the 21st for a few more years)). I need a laptop that is durable, pretty fast, has a good bit of memory, NON-MAC, and yes, I'm gonna say it, good capabilities for video games. There I go spilling a deep dark secret. I heart video games and I figure, why not get all the "necessities". right? :) So, if any of you know of anywhere that would be an inexpensive place to get a pretty good used or new lappy, let me know. I would be OH so grateful :)
Well, that's it for now. Lunchtime. Jimmy Johns... can we say yum? yup. Adios french toast.

The Search is On.........

Every time I look at the title of this blog I think of the fab Glenn Frey song "The Heat is On"... and now, that will be stuck in your heads ALL day. You're welcome. :)
Anyhooooooo. So, yes, this week I sent in all the documents that they need to start the unrelated donor search. There's a bazillion people on the donor list, but as you ALL know, I'm kinda unique. So, we'll just have to cross our toes and wait. Yay for waiting. 
I have had a few people ask me how to get tested to be a donor. Now, keep in mind that you can't go in and say, Hey, I'm wanting to be tested for sody and so.......(that's me). But, you CAN go online to www.marrow.org. and join the "club". Unfortunately no t-shirts. But, if you are MY donor, I'm SO making you a shirt. :) So, thanks to all of you who have already gone and requested kits. You guys are fanulous. Don't feel like you HAVE to, seriously, this can be a big choice, cause there are more people than me looking for donors, so there's a chance you may match someone else. :) I just wanted to put that info out there for those of you who wanted it.
In the meantime, my two oncologists are still looking to see if there is a type of medicinal therapy that can help with my SHPLEEN and it's antics.  :/ It's been getting more and more restless lately. Shilly Shpleen. There were a couple drugs that they thought MIGHT work, but after a couple days of mulling and chatting with each other, they decided that the goods of those two medications didn't outweigh the bad, so they were going to pass on making me deal with that. Sweet doccas, always following their guts to fix mine. Fantastic. So, no new drugs for the time being. I AM hoping that they are able to find something to pass the time with because the meds I'm on now aren't really cutting it anymore. My Shpleen is definitely winning that arm wrestling match.hmmm.....
Hey, Speaking of Fantastic. (yes, I DID say the word above). Knock 'em Dead Dinner Theatre on ParkCenter is currently running one of my VERY favorite shows in the whole world. The Fantasticks! And it just so happens that one of my very people on the whole world is one of the players.....:) wink wink... you know who you are. I have had the utmost pleasure in watching this "fantastick" show twice. You have to know, I don't see a show twice lightly. I must really like it. Besides the fact that my "sister" is such an adorable gal in this show, the whole cast does a fantastic job pulling you in to a zany world where ANYTHING is possible. :) I whole-heartedly recommend that everyone see this. They are only showing this weekend and next, so no lazy! (wow, did I just sound like a cheap newspaper reviewer or WHAT!) :)
I'm going to try to blog a little more often now, I may not have tons of MEDICAL things happening, but I sure do have some funny things that so need to be put out into cyberspace. :) Love you all. Please take care of yourselves and eat all the Oatmeal Chocolate/Butterscotch Chip Cookies you can and send some to me. :) They are my favorite. :) Luvs, PHO, Dani