Seattle.....

Well, I am here. I actually flew into Seattle this morning around 930.  Spent a nice chill day with my brother and then had a nice dinner with B&B and their friends. :) Chicken Pot Pie. Where can you go wrong with that. :) Yummlicious.

So, it all begins tomorrow for real.  I have to be at the clinic at 11:15. I get to dive straight in with a full blown physical exam and an extensive meeting with my Docca. :)  I did find out some great news today.  I will be able to move into my apartment near the hospital this Friday evening.  That will be nice.  B&B are being so kind to let me crash their house and borrow their car and I'm sure they would have been very gracious in letting me stay as long as I needed, but I will take the apartment now.  It could have been possible to extend the date when I wanted to move in, but then I was taking a chance that due to the waiting list I wouldn't have been able to get in when I actually NEEDED it. :) I don't know if any of that makes any sense, but the long and short of it is.... I am moving into Pete Gross on Friday. At that point as well I will have a mailing address for all of you that were asking about that. :)

Anyhoooooo.... I am TOAST right at the moment, but I had promised SO many of you that I would write everyday.... here ya go.

Night.

I know I know, it's been forever....

They like to call that a cliff hanger..... no really, I'm sorry that it has been much longer than expected. I really DID have the intention of writing the day after my last post, but I just got so distracted... Ugh. :) You can probably imagine why. :/


So, here's the follow up that you have all harangued me about. :)


Yes, there were THREE perfect match donors found on the first go-round. Amazing. They told me that was quite rare that so many were found on the first try. My sister's reaction was that I should be excited to meet my "real family" Rude. :) But hey, as previously decided, I must be adopted so maybe.....  :)


Now, since we have matches we can go forward and again as previously stated, I am checking in at the SCCA Clinic on June 1st. Whoa Nelly! :) So, the plan is thus.......
I am working through the end of next week. Sadness. I will definitely miss my co-workers and my job, but alas, what's needs to be done, shall be done eh? No worries though, I'm so coming back to my fantastic place of employment. My fingers are crossed that will happen late late this year or January. Of course I will be coming back at first part-time, but hey. I think by December I will be so bored stiff that I won't know what to do with myself and working part time will sound like going to Disneyland. :)

So, work for another week. Then Memorial Day Weekend, hang with the family camping, chill with my animals (how I heart them). Then I fly out on the 31st!!! Eek!! So crazy soon! :) I'm still reeling a bit from the quickity (is that a word? Is now).

The first two weeks of my "experience" I will be chillin' by myself and going to the clinic everyday to have EVERY exam known to humankind. Seriously, any exam that is an anagram, yep, I get to do it. fun times. :) Two weeks of poking and prodding including another bone marrow biopsy.. I mean really, could there be anything more fun? I submit that there is not! :)  Just in case you couldn't tell, there was a little sarcasm in that last sentence. :)

After those two weeks of joy, my madre will show up and we will jump headfirst into uber cool stuff. Getting a Hickman central line so I can be the Vampire version of a Camelback Backpack, 4 days of pill version outpatient crazy chemo, then get admitted to the hospital to finish off my chemo with a drip. :) Woot. Then within a couple days of me finishing off my chemo, I will officially get my transplant and a longer life with it. yay for lengthy lives. My actual transplant is scheduled for June 24th, but that is possible to change a bit depending on the donor's situation. It will only move by a couple days, but it could change. My father is planning on flying up for the actual transplant. That will be nice for my momsy to have someone to be with for a couple days. Take her mind off of me.

Then from there, the general plan is to be in the hospital for a couple weeks. Then they will release me into my mammy's care and we will hang out in Seattle for another couple months. The timeline right now is that they will let me come back to Boise somewhere near the beginning of November. That seems so long from now. Wow. Vacation!

So, that is it for now. All I got. Still don't know exactly how I'm processing this and feeling about it. I CAN say though that I am ready. Yep. Let's get this thing done and move on already right? :) I'm sure you are all as tired as I am hearing about this. :)

So, thank you all again for all of your help and love and support and love and and and and ....... You are all so good to me and I feel very undeserving of such wonderful friends and family. :)  If you have any questions, I probably have SOME answers. You are more than welcome to comment on here or just email me. I would love to answer any questions that I can. Loves and Hugs.

The news we've been waiting for.....eeeeeeeeek

Well, here it is... the day I found out when I need to be in Seattle. It's official. I need to check-in to the SCCA Clinic on June 1st. Yup.... only three weeks from today. Crazy fast! It's a strange sensation to go from the hurry-up-and-wait stage to BAM! let's get this thing done. I'm not sure what to say. I think that I will ruminate on this and then write more tomorrow. yes? yes.

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