Well, things are peachy with a few bruises......

So, I've been home for a little over a month and I thought that things were going relatively well.  I haven't been feeling AS sick as I did in Seattle. At least not everyday. There have been tough days, more than I expected, but all in all things (I thought) were going just dandylicious. I scheduled my return to work, even if it is just a couple hours a day. I haven't been able to find a place to live in Boise as of yet, but hey, I just haven't found the right place eh? That is what happens when you have a big dog that needs a fenced yard. Makes things a bit more difficult. Especially when you are on disability and a tight budget. Anyhoooo, even though there have been some rough things and tough days, I was thinking things were looking up. I had even scheduled an appointment to audition for a musical. Well, yesterday, I had to make a few different choices.

It's been a few days that I have NOT been feeling well. I've been ridiculously exhausted, to say the least a little grouchy, nauseated, either starving or so sick of food I can't stand it. My mouth has been sore and my tongue felt like someone has taken a cheese grater to it, my back had a slight redness to it, but was itchy as all get out. To say the least it was some sarcastic good times. :) So, even though I already had an appointment scheduled with my Oncologist for today, I called them on Tuesday to let them know all this fun that was happening and they had me come in yesterday. Blood draw and then chat followed by a great fun surprise. :) 

Well, the blood draw came back as expected. My liver is not cooperating properly, my white blood cell count is falling and all in all things are not looking as good as they did a month or so ago. So, with those lovely results and the additional issues I was having, the doctor said things weren't as wonderful as they had hoped. I mean, things are still going well. My transplant is still good to go and that is all fine, just the repercussions of it are starting to act up. :) So, a diagnosis of mild Graft Versus Host disease in my mouth and on my back brought on a new medication of the most FOUL tasting topical steroid mouthwash. I mean, who REALLY thinks THAT is what cherries taste like. I mean really. Four times a day of the nasty stuff. :) Then a diagnosis of dehydration brought on an IV in my hand connected to a big bag o' hydration. :) I can say that it was nice to just plug in to my audible book on my kindle, take advantage of the wonderment of a heated blanket and just lay back and get some saline put in my bloodstream. It's phenomenal the difference a bag o' water can make in how a person feels. I have another tentative appointment for more IV joy next week. :)

To say the least, I did not expect to be here at this point. I have had to have a reality check that I am weaker than I thought and that I really DO have to take my time in recovering. To say the least, no auditioning for musicals. :)

I am feeling alright today, drinking more fluids than any normal person should HAVE to, checking Craigslist every ten minutes to try to find a house and trying to decide how to go forward with all my plans and schemes without troubling my health. Anyway, that's the update for these days. :) I'm really doing alright, but there just seems to be more obstacles and hold ups than I expected. :) But it's all good. I know that there's a specific plan for me and it's gonna be so awesome I won't be able to handle it. :) Woot. I can't wait, but hey, I get to. :)

About a month later....... I guess I will update..... just kidding, I'm really sorry...

I know it has been a LONG time and I really don't have any good reason why I haven't updated before now. Just haven't. So, I will start being more consistent again. Starting with clearing up how it went having my Hickman Line removed. Can I just start with the word, memorable. :)

So, for weeks previous to the removal, my doctors had been telling me that I would just be in an ordinary clinic room and literally, one of them would wrap their hand in the protruding tubes and yank the thing out of my chest. To say the least that made me start having nightmares about such an experience. I mean really????!????!?!?!?!? Um..... I was thinking that maybe I should just keep it in FOREVER.  No removal necessary. Nope. Maybe they were just messing with me? No, turns out they weren't, but since I showed extreme apprehension to their means of removal AND I lucked out that the doctor that put the line in happened to be available to take it out. Whew. :)

So, the day I was literally both dreading and looking forward to came. I was SO nervous. SO nervous. I don't get that nervous about much, but I was slightly spazzing out. On the other hand, however, I was SO excited to not have those dangling tubes protruding from my chest any longer and I was so excited not to have to take care of it anymore, etc. SO, with mixed emotions I made my way to the clinic to have my line removed. Still thinking that someone was just gonna wrap and rip it..... oy.

To tell the truth, the doctor did start with that. No joke. He didn't YANK, but he did wrap his hand in the tubes and kinda tug. Apparently, some people's lines literally just fall out when tugged on. I was not so lucky. Lucky? I don't know if I would say that, but either way, mine didn't fall out. The doctor went on to explain that I have three really GREAT things going on with me, that are really BAD when it comes to removing my line. 1. I'm Young 2. I'm pretty healthy. My transplant went well and I was feeling pretty good. 3. Due to my blood working pretty well, my platelets were high and doing their job so, they were attacking the little piece of fabric that was holding my line in place.

So, after explaining that those were both bad and good things, he said that the removal of my line might be a little more difficult than most. (Woooooooooohooooooo) That wasn't what I was thinking. I immediately got MORE tense and had to really focus on breathing deeply so I didn't hyperventilate. So, THANKFULLY, he did use some lovely topical numbing stuff. Six tiny shots all the way around the area where the tubes were placed in my chest. Then, out come a little pair of scissors. He explained that he would have to cut out around the tube to release it. So, even though I couldn't feel it, I was Squishing the nurses hand with my right hand and pushing against the other side of my chest with my left hand as HARD as I could. To say the least, the next day my arms and hands ached like they never have before. :) So, snip snip snip and it starts coming loose. He decides to give it a tug to help it out a bit.. One yank and a LITTLE of it came loose, but it felt like he was trying to pull me off my chair. Then some more snip snip snip snip and he decides that he can get it out with one more "manly" tug. Manly was an understatement. It literally felt like he was trying to pull my collarbone through this tiny hole in my chest. Now, keep in mind this was just pressure I was feeling, not pain thank goodness, but still. I really thought that my collarbone would come flying out the whole. But then all of a sudden I fall back in the chair and the doctor jumps back a bit holding up my line and asking if I wanted to keep it. (As you can guess I gave him a crazy look and said, um, no.) Thanks, but....... I realized that I had come really close to passing out a couple times during that whole ordeal. That was weird, I've been through some interesting things, but never once passed out. So, I must not have been doing very well with my deep breathing. :/

So, after it was out, since the line had been hanging down a big vein, the doctor had to hold gauze to my chest for a good ten minutes. I'll tell ya, the pressure he put on the vein almost hurt worse than the rest of the procedure. That man has some power. Then, it was over. Wow. No more tubes, no more having to change the bandage every day, no more being careful to yank on it (cause that hurt). It was gone and all that was left was a small square of gauze and tape. Oh, and some pain. Once the numbing shots wore off I did feel a bit of pain. It was hard to do anything with my right side for a few days. Then I started worrying about the fact that from now on, with the line gone, I would have to start getting poked in the arm again. Lame. :)

Well, that's it. That's the story of the Hickman Line removal. All in all, I lived through it and I still have my collarbone. Now I've been home for almost a month and things are different. Very, but things are still good and bad, but getting better all the time. I will continue this saga later. I hope all are well and happy, thank you for your support through this whole adventure and hopefully, I will get to see you all at some point in the next while.

I'm a mixture of nerves and excitement and relief.....

Today is the day that I get my Hickman Central Line removed. I'm a little nervous about this to say the least. From what my doctors have been telling me, the procedure of removing the line is as follows: Wrap the exposed portion around the doctors hand and yank. Ummmmmm......... no deadening of the area, no pain meds, nuthin. They have compared it to tying a string to a loose tooth, distracting the child and pulling. Bah! One consolation is that the doctor that put the thing in me is the one removing it, so at least I have confidence in him and his abilities. I just don't have confidence in MY abilities to not scream bloody murder. Maybe they have leather straps for me to put between my teeth to chomp on to avoid the yelling. Hmmm.. I will have to ask. :/ So, yah 3:15 today my central line gets yanked. Fun for me. Now, don't get me wrong. I a SO stoked that I don't have to go home with the thing still attached. There for a while there was that possibility. I am very pleased that it will be gone and all the annoyance that comes with it will be gone. That will be nice. I am just currently nervous about the removal of said object. But, I will be tough and deal with it eh? Cause that is what I do. :) tee hee. :)

Post said procedure I will have some well deserved rest time, but just for a bit. B&B are taking my momsy and I out to dinner as a farewell outing. I am excited to see the boys and I am excited to eat some uber delicious food! It will be interesting to see how I feel. I'm sure all will be dandy. I've been told that people are out and about going and doing within half an hour of having their lines yanked. So, since I'm slightly abnormal in EVERY way, I will give myself an hour. :/ I will have to blab tomorrow to let you know how it went eh? Eh. :)

Now, to go backwards, H just left on Monday night. She had been here since Wednesday night last. :) What a busy and fun weekend we had!!! We went to Pike Place Market, the Seattle Aquarium, the General Relief Society Broadcast (which was fantastic), and on a Harbor Cruise. So much fun was had. I mean really. H and I could just sitting still and still end up having too much fun and laughing way too much. :) It was beyond fun to have her around. She cracks me up. :) But I do have to say, when she left, I crashed. I was so tired yesterday. But I had my Transfusion meeting and my Departure meeting. Now, weirdness news for the day from both meetings. From the Transfusion meeting I learned that in the case that I needed a blood or platelet transfusion, when they take my blood to determine what type of blood to give me....... My blood type is O positive when you take it from the blood stream, but my organs and such still show a B blood type. WHat???? no I'm serious. It's weird. But here's the weirdness from the Departure Conference. My DNA. Yup, I have two types of DNA for the rest of my life. Blood will show my donors DNA, but if they did a mouth swab or took it from any other bodily fluid, MY original DNA I was born with. What the WILD!!!! The amazingness of science and medicine. Anyhoo. Just thought I would share that neat info. :) That's it for now. More soon.

Well, wow, I am a huge slacker..... yup.

I know I know, it's been a long time since I have written. I apologize. Really. I guess I could give numerous excuses, but I won't. I will just leave it at the fact that I didn't blog. Sorry.

OK, now, on to the news. Wow, since it's been forever, there is a plethora of things to write about so I hope I cover it all. :

In the area of fun stuff and such, it's been great! My moms and I went to Whidbey Island on Saturday. What a beautiful place!! :) It was a wonderful cool day with a little breeze. Perfect. We went to the cutest farmers market, stopped at a quaint used store, walked through a beautifully serene garden and explored a lighthouse. Speaking of the lighthouse, besides being afraid of butterflies, I'm also afraid of ladders. Now, I've know this for a long time, but as we were walking up the stairs of the lighthouse all of a sudden, yup, they turn into a ladder. Of course, I can see that they are wrought iron and VERY sturdy, but I still freak out a bit and take seven years climbing up it. Down was even more comical, but hey, I did it and I was glad. The view from the top was beautiful. It was a short lighthouse, but still had a wonderful view. :) After all the sightseeing and some lunch on the island, we decided to drive back to Seattle over Deception Pass rather than go back to the Ferry. It's a two-hour drive, but so worth it. Deception Pass alone was worth the drive.

Isn't that lovely? Yuppers. So, anyhoo, that was Saturday, it took all day. I was so tired. :) A good tired.

Sunday was lovely as well. My father and brother J2 are in Vancouver for a conference this week and they came up on Sunday to Tacoma to my sister's house so we had a family gathering. I love my family. :) In regards to my family, going home will be a bittersweet thing. I'm excited to be home and see the family that I left behind in Boise, but it has been nice to be so close to B & M here and their families. It is rare, usually that I get to see them under normal circumstances. Now, if only we could work out a way to go spend a while in Eastern Idaho with J2 and his fam. I would be happy happy for quite some time. There ARE, however, current plans for all to be in Boise for Thanksgiving and that makes me joyful. 

OK, on to medical news. I found out on Monday for sure that I don't have to go home on hydration. Which means that I don't have to go home with my Hickman Line in place. I'm very pleased with this news. :) There has been some question about this since I can't take Magnesium in pill form. One of my meds basically flushes all magnesium out of my body, and now that I am taking less of said pill, I have more Mag. With added efforts of eating Magnesium rich foods, my levels look good enough and the doc won't make me continue hydration and Magnesium at home. Yay. :) I am a little nervous about the removal of the Hickman Line, but we'll just have to wait and see how painful that really will be eh? :) Other than that, big news, I haven't had a bad day in like 10 days or so. RECORD! Seriously, this whole process I have maybe gone two or three days at a time feeling ok then have two or three horrible days. This past week or better has been bliss. Not to say that I am back to my previous self. Don't think I will be for years yet, but I'm SO much better than a month ago its astonishing! I actually look forward to getting up and having a day rather than dreading them and wondering what will go wrong next. :) That's pretty much all I have on the health front right now. Next week will be my departure meeting with all the results of the tests I have had and the most recent bone marrow biopsy. I will let you know what they say. :)

As for the rest of this week. H is gonna be here!!!!!!!!!! She will be flying up from SLC on Wed. and staying until Mon. night. SO thrilled!!! I heart her heaps. :) Oh, yes, let me not forget. I got to see A yesterday for a little while. He was up here for his jaw surgery and he looked great!! Apparently all went swimmingly and he is recovering and healing quickly. He looks great and I can't wait to see him once ALL the swelling goes down. It will be wonderful! :) I'm so excited for him that he was finally able to get this surgery done. I know he's happy. So that was a fun treat yesterday. :) I heart A as well. :)

OK, even though it's been a while and I'm sure I missed things. I am so done for the day. I hope all of you are well and I hope to see you all soon!!!! 10 DAYS!!!!!!

I bought my plane ticket home!!!!!!

Yup, I sure did. I get to fly home the morning of September 30th. Woot! Now, before I face a pile of ridicule about me flying home and my mother having to drive by herself the way long trip home, it was kinda her idea. We discussed it and I still just get SO worn out riding in the car, even for short 45 minute to 1 hour trips, so I'm flying. I feel bad that she will be alone, but she seems ok with it, so what to do eh? So, yah, I will be home soon. I am so thrilled!!! I seriously have missed Boise. Well, I will be living in Idaho City with the parental units until I can find a suitable apartment in Boise, but I have missed both places. I commented to my moms today that I am excited for tap water in Boise. The tap water here tastes funny. I know, random, but true! So, there's some good news. 

Other news? My sister and her family are in town this weekend. I am thrilled I get to see them a bit. They are staying at my sister's house in Tacoma, but I get to see them tomorrow and Sunday. It seems weird to not have seen them for this many a month since I lived with them before I came here, so it will be really pleasant to see them. Then next weekend I get to see my dad, brother and nephew that I haven't seen forever. The three of them are coming up for a conference in Portland for work and they will be coming up to my sister's house in Tacoma next Sunday. THEN, my good friend H will be here for like 5 days!!!! We have some fun things planned! Wow, crazy busy with people, but it will be a good way to go out of Seattle. All these people are mixed in with a pile of appointments at the clinic as my "going home" appointments. They start next week. I will have two weeks of full days of all kinds of appointments to make sure I really am good to go home. Similar appointments to my first two weeks here in Seattle what seems forever ago. So, it's gonna be crazy, but it will make the time FLY!

Now, for today. My momsy and I went to the Pacific Science Center. It was uber fun, but I have a confession. It is official, Dani is afraid of butterflies. No, I'm not joking. (chagrin) In this science center there is a butterfly house. You enter into this amazing jungle-fied room where the butterflies just fly around free like and live there short lives in a beautiful place. Now, of course you are not allowed to chase them or grab at them and such, but they have no problem landing on people and zooming right by your head and such. To be 100% honest, I slightly spazzed out everytime I thought one was getting too close. No really. I'm afraid of butterflies. Wow. I've always been told I was special, but really, this is just ridiculous. It did remind me of something though. Please watch attached video. Brian Regan is the best. 

Anyhoo, we also watched a galaxy show in the planetarium and played with some of the science experiments. It was a fun outing. It was a good day. Yup. So, coming home soon, excited for tap water, afraid of butterflies. That's about it. :) Luvs.

 

Good Timing and Bad Timing

So, I have blabbed about timing before right? Right. Well, I certainly re-learned the lesson that timing is everything yesterday. I felt like hud all day. Know why? Because I slept in. No sleeping in for me. I HAVE to get up between 730 and 800 in the morning, take a pill, eat some food, take my anti-nausea pills, take the rest of my meds, then lie down for about 15-20 minutes. If this doesn't happen almost EXACTLY like this, my whole day is thrown. As I learned AGAIN yesterday. I wasn't up until around 10 and that just made the rest of the day full of yuck. Ah well. Today was done right. I learned. Good job me huh. You would think that I would have learned that a long time ago because it keeps happening. I'm a nerd. We all know that.

So, moving on. Saturday was a fun day! We went downtown to what is called Pioneer Square. It's a bustling area of town. Full of people. Well at least it was on Saturday. That might have had something to do with it being Labor Day Weekend, but still it was crazy busy! :) There are some beautiful building facades and a huge totem pole in the square. Most importantly though, were the large two story toy store and the chocolate shop. Now don't get me wrong. The wonderful and colorful history of Seattle was not lost on me, but really..... toys and chocolate? Or rather in my personal case it was toys and ice cream. Wouldn't you have gotten distracted? Yes. :) It was a glorious day all in all. The weather was beautiful and there was a nice breeze. It was nice to get out and wander. Very nice.

Today has been pretty low key. We have mostly hung out in the apartment, but we did wander on up to the rooftop garden for a bit. Moms took some pics of the Seattle skyline while I blew some bubbles. Then Moms blew some bubbles. She wasn't going to miss THAT opportunity. :) Then we had a nice long sit on the wooden swing chair and chatted about all the changes that will happen when we get home. Both of us have many things on our minds about the next few months, but we will just have to take things day by day huh. :) Anyway, I currently have a smashing headache so I'm going to be done writing. Hope that's ok. Love you all. I'm so grateful for the support that I am STILL getting from all sides and corners of my life. Thank you, everyone.

The adventures of my week.....

This has been a good week. NO really..... Even with the ups and downs, all in all it has been a good week. Started out with a fun Monday evening spent at my bro. B's house having dinner and watching the 25th Anniversary Concert Performance of Les Mis. Um, amazing. Yes, it was so great! At B's house they have the nicest theatre room setup. Huge screen, surround sound, etc... The perfect place to watch this amazing show. It was very sweet of B&B to have us over for such yummy food and fun. It was definitely a late night, didn't get home till after midnight, but it was worth it.

Worth it, but it totally threw off my Tuesday schedule causing me to not feel so hot all day. I felt OK, but not rearing to go and do stuff. I have found that I really have to keep a strict schedule when it comes to getting up, taking my pills, eating, etc. When I sleep in it throws it all off and my stomach just doesn't handle that well. I swear. When it comes to my stomach I am one of the most sensitive people in the world. My doctors totally agree as well. Any tiny little change in my meds or schedule and I am nauseated and such all the time. Lame. I sure hope this is something that will simmer down soon enough.

Speaking of changes in meds. So, they tested my blood for estrogen levels and such and it's official. At the age of 32, I am in menopause. Ridiculous. :/ I've always felt that I have matured quicker than my peers. Ha ha.. jk. :) So, lovely hot flashes are here to stay for a while. My OB doctor here did recommend BC Pills as mentioned in previous blogs and I took them for two days. Guess how I reacted to that? Yup, I was nauseated. As my mother put it, "it was very much like morning sickness". Yup, from the moment I got up I felt sick until around 3ish in the afternoon, they I felt ok. It put quite the damper on the past couple days. However, the decision has been made to stop the BC Pills for a couple reasons. There are a lot of risks with taking BC and the only things they WOULD be doing for me are treating my symptoms of hot flashes and having a cycle every month. (I won't miss that). So, since these BC pills, as far as we understand, will not help heal or restore anything that I have lost, we don't see the benefits. I would much rather have hot flashes every now and again than be nauseated for half the day every day. Anyhoooo... lots of info, but just keeping you all up to date.

So, Monday was awesome, Tuesday and Wednesday and this morning were on the not-so-awesome side of things. We are hoping that things will start looking up again tomorrow morning. Now, on to cool news of the day...... We were informed today, that IF everything continues to go well and nothing serious comes up, I could be discharged around the 28th-30th of this month. WHAT? Awesome! That is so stinkin soon I can't even fathom it. So, that's fun news huh? Yup. A few days earlier than expected. One thing, we have accumulated SO much stuff it is going to be a trick to get it all home. :) But we shall prevail. Well, that's all the news I have today. Hopefully next time I write I will be able to report no nausea. Wouldn't that be a miracle? Um, yes.

Another quiet and peaceful Sunday. :)

Yup, today was quite nice. Slept in a bit, went to church (which was wonderful), took a nap (after, for those of you who may be thinking during), read some of my book, now we are watching Masterpiece Mystery. That's what I call a very productive day. :)

After Friday I needed a couple days break. Although Friday was great fun and very enlightening, it wore me out crazy like. My mumsy and I decided it was high time that we went to the Seattle Art Museum. High time. So, off we went. Thanks to complimentary passes for patients and caregivers from SCCA, no charge, no problemo. Can I just confess one thing about myself that most of you may not know? I could spend a day wandering through art museums. No really. I am so slow in art museums that I normally have to go alone to spare anyone else. :) I'm that person that will find a painting I like and sit down in front of it and look at it forever until I have every inch memorized given the chance. Due to the fact that about three hours into our art viewing pleasure my legs started to kill, we kinda sped through the last few rooms and moved on. 

We took a quick trip down to the parking garage for some munchies we had in our cooler and some mucho needed leg rest. We hung out for a bit snacking and reveling over the art museum, but even though both of us had aching bones in our legs, there was a little shop that my madre wanted to go to about 5 blocks from the museum. Down on the waterfront. So, down to the waterfront we went. It was actually quite a nice day, in the shade. We just wandered on down to the shop, bought some fun stuff for family members and decided it was high time for some ice cream. High time! So, a huge scoop of Butter Pecan for mom and Huckleberry for me and we were set. Then up a couple hills back to the museum where we had parked.Then home we went to crash and relax. It was a great great day. Oh, and I forgot to give you one of my mother's confessions about art. She is VERY talented. I have been asking her for a painting for years, but no....... silly mother of mine. 

Anyhooooo. :) So, then yesterday, my legs pretty much needed to recover. I hung about the apartment and wrote cards and such. My mom did get out and go grocery shopping for a bit, but I didn't tag along. It was the beginning of a long, quiet weekend. Lovely. Lovely.

As for my health, all seems to be well. No relapses since Tuesday. I often think of how lucky I am on my recovery. I really have had it easy. I don't have any BC pills yet, and we will have to wait and see on that. I'm sure that adding a new medication will put a fun spin on my health for a minute, but hopefully it won't be too bad. With that, I am on the path of slowly reducing all of my other medications. It's great to hear that within a couple weeks or so I will be down a couple pills and then a couple weeks past that, possibly on the way home. If I were on a mission, my companions would all call me trunky. Eager to be home with my babies. Eager to find a place to live and start again.

Oh, and to finish it all out tonight. I think that my hair is growing back. I have peach fuzz where there used to be total bald. Wahooooooooooo!!!!

Another A day..... A+ if I do say so myself :)

A day equals A was here. Just in case you were wondering. Ah, A, how we adore him. He had to come up to Seattle for the day again so we got to hang out a bit. Guess what we spent the majority of our time together doing..... finishing a puzzle. Aren't we the most exciting people in the world? Hey, puzzles are great and A is so stinkin' skilled. Seriously, if they made puzzling an Olympic Sport, A would win Gold.

Alrighty, so A was here and we had a calm day. I did have one appointment in the middle of the day that kinda put a wrench in doing anything MORE exciting than a puzzle and poor A had to hang out in the lobby with my mom during this appointment. :) jk. I didn't think that he wanted to come to a Gynecological consultation. Nope, probably not. I didn't even tell him what the appointment was, just that I had one and I would be out shortly. It wasn't a biggie. All the doc and I did was sit and chat about the fact that for two months now, nuthin'. I wanted to make sure that was normal and that hot flashes were normal and that cramps without any actual cycle was normal, ya know. Apparently yes.

The Busulfan I took, one of my chemos, basically ruined whatever it is in my body that creates Estrogen. So, in order to regulate the Estrogen, which would take away all these crazy side effect, apparently, she is recommending that I go on a low dose BC pill. Basically for the rest of my life. Well, unless I'm trying to get pregnant, which we don't even know if that is possible, or if I'm producing eggs anymore or even if I have eggs, they may not be healthy enough to be fertilized. Pretty much they tell everyone that goes through this process that they WON'T have children of their own, but I say two things: If I am meant to have children I will; and if I can't I will take H's advice and adopt a brood of ethnic children. :) Wow, fellas reading this, was that too much info? Sorry. I'm sure you will recover. So, I will be starting BC pills supposedly this weekend and I should start feeling more like myself at 32 not some menopausal age. :)

Now, I have a couple silly stories. Well, one is an anecdote for Optimism and one is a true life Dani-is-a-dork story. Anecdote first. A cancer patient wakes up one morning with only three hairs on her head. She says, "Excellent, I will make a braid." The next morning she wakes up with only two hairs on her head ans says, "Excellent, I will have piggy tales." The next morning she wakes up with only one hair left on her head and she says, "Wonderful, I will have a ponytail." Now, the next morning she wakes to find she has no hair on her head. She exclaims, "Excellent, I don't have to do my hair any more!" Pure Optimism. :) Love it. That story was told to me by Dr. F here at SCCA, which I am literally tearful to say that he is transferring to another team of doctors next week. My clinic with him tomorrow will be the last one. That makes me really sad. F was there on my hospital team and then when he transferred over to the Clinic it worked out that when I got out of the Hospital he was my doc at the clinic as well. It will be very different without him to harrass and be harrassed by. We are about the same age and have very similar senses of humor and it just has made this whole process better knowing that F is there and on my team and on my side... So, I'm a little bummed about the change in the line up, but hey, I will deal I guess. :) I need a little optimism. I got it, he is kinda like an annoying younger brother sometimes, now I won't have to deal with that. Just kidding.

OK, Dani story for the day. I love this story both because A was witness to it and because I really love making fun of myself. Hours of enjoyment. Today, A and I were riding up in the elevator and chatting. We got in, pushed 6 (which is the floor upon which I live) and resumed chatting. The elevator stopped, door opened. We knew my mom was already in the apartment so we just went around the corner and opened the door. As soon as I open the door I see a big number next to the "201" and the people sitting in the living room and realized that I sure wasn't on the 6th floor. Ha ha... Classic. I don't think they saw us or heard us, but we quietly shut the door and beat it to the elevator just in case. The rest of the day whenever we got in the elevator, A would try pushing 2 first, just in case........ rude. It was certainly awkward but hilarious. Loved it. Made my day a little brighter. :) Really, I'm a ding-dong. Don't you think that I would have realized the ride up from the 1st floor to the 6th floor sure was fast and had a lack of dings. oy vey. Ah well, this is who I am and I'm proud to be me. :)

Anyhooo... That's about it for me and around here. Weather has be AWESOME. Sorry for all of you that are roasting to death. Mid 70s to low 80s the whole time we've been here. And yes, I'm gloating a little. :) jk. I really hope that all of you are doing well and that I will get to see you all soon. Just about a month and a bit and I get to come home. Hopefully. That's OUR plan at least. :) I am continually grateful for all the support and well wishes that I have received and am still receiving. You are all wonderful beautiful people. Love you all and I write again soon. :)

Woops......

So, when I mentioned that I wasn't going to write every day, I certainly didn't intend to go almost a whole week without blabbing. My bad. So, I better get to updating... :)

Let's just start at the beginning... a very good place to start... (Please tell me at least a few of you sang those last couple lines, please. Cause I sure did.) Monday. Actually Monday was one of those days where I didn't feel so hot so we just chilled at the apartment. Watched some television and movies.. yah know, pure excitement. :) As a matter of fact, to harp further on the breaking away from Morphine thing from the last blab, it is SO HARD. I feel blah most days, but hopefully I will be through it soon and things will get back to whatever kind of normal they were before. :) That would be sweet! So, that was Monday...blah.

Tuesday was fun. We went over to my brother's house and I helped him get ready to play at his brother in laws' wedding. So, my brother is a very talented guy, but he has this much confidence when it comes to his piano/organ playing capabilities. This much. He has been practicing for a while now, but there are like a billion songs that he was asked to play, seriously, and about half of them someone was also singing. Now, this wedding is in Michigan and he was going to have a total of one day before the wedding to work through these pieces with the singer. Now, for those of you who accompany, you can probably feel my brother's pain. So, we went over to his place so I could read through those songs with him so he felt like he got a little more practice in. I think he is silly though. He is so talented that I am sure the wedding ceremony will only be the better because he is playing. :) I heart my big bro. Anyway, that was Tuesday.

Wednesday my madre and I went to the MOVIES!!!! So, my doccas tell me that I can go out and do things like going to the movies and such, even though my immune system is pretty much non-existent. They just reccomend that I go to a matinee, which is cheaper anyway so no problem here. Nah, they just want to make sure I'm not around huge crowds of people. Too many bugs a-floatin. So, we went to a 12:30 matinee of "The Help". FANTASTIC!!! Seriously. I recommend this movie whole-heartedly. Such a good flick and such a fun little outing with the momsy. :) But then of course, I had to go home and rest from sitting in a chair for a little over 2 hours. :/ Yes, I needed to lie down. :) I'm such a weakling.

Moving on to Thursday. Clinic day. I went for my usual morning blood draw then met with the doctors to discuss my craziness. :) Nah, things with my recovery from transplant are still going really really well, it's just the weirdness with my stomach and pain and such that we had to figure out. It is really difficult to explain a "weird" feeling in your belly to your doctor. I'm not sure that it was ever really defined, but we decided I needed a new pain reliever for my SHPLEEN and leg. Yes, my shpleen still hurts. I've been told that will take a good year to rectify. Just due to the fact that my bone marrow will take time to recover fully and start making my blood cells again, so my shpleen is still taking up the slack and will for a while. :) Fun times. I'm almost used to that feeling. :/ So, after meeting with the doctors, we quickly chatted with my nutricionist and decided things were still going well with food and such as well and thus ended the clinic visits. And thus also pretty much ended Thursday. We went home and chilled. Again, I needed to recover from all the action! :/ Nah, I have just been Uber tired lately.

And we come to today. Today I woke up feeling like blah blah..... So, I have planted myself on the couch and rested pretty much all day. My mom left for a bit and did some running around so don't think that just because I'm not feeling hot, I trap my mother here... Nope... I think most of the time she is just dandy fine hanging out and not doing a whole lot, but there are times when everyone just needs to go out. I DID walk up and down the stairs once. That felt good, but other that I have just chilled. So, hopefully tomorrow I will feel much better. We are going to Tacoma to hang with my sister's family. YES!!!!!

Day 50!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Can you believe it? In theory, I am halfway through this thing!!!! Crazy great! Truth is, each day seems really long, but then after a week I'm stunned to realize a week has gone by. Now I'm stunned to realize that it has been 50 days since my transplant. That's really hard for me to imagine. Anyway. The past 5 days have been full of ups and downs and all arounds. Some days I have really struggled and thought that this will never end and I will never feel normal again. But then, there were MORE days where the sun was shining and I was feeling at least well enough to feel like a human being and get up and do things. I have to say that through these roller coaster of days and nights, my mom has been the most patient and caring person possible. I couldn't ask for a better caregiver. Nope. :)

The first large portion of today turned out to be one of those rougher times. Again blaming the morphine withdrawals. I think that we have just come to the decision that eventually I'm gonna have to go through some yuck to get really past this. Well, we are down to two half tablets a day. We are gonna just try to stretch the time in between doses until I only need one a day, then we'll go from there. This may take longer than expected. Just one more adventure eh? :)

Well, K left this morning. I felt bad that she had to witness a not so healthy Dani. Ya know I try to hide the fact that I'm a recovering transplant patient when I have guests... duh, that doesn't work so well. :/ After we dropped her off at the airport we went to church, but I was only able to stay for a short while. New thing today, My kidneys are killing me. We are blaming this on dehydration, so more water more water. My mom's favorite thing to say lately is "drink more!." So, while I am still on IV Hydration, I still have to drink heaps of water and Gatorade to keep my kidneys happy.

So, there is the update for the 50th day. 50 more to go, hopefully, and I will be homeward bound to Boise. Let's just hope that I can find a place to live quickly thereafter near my job with a fenced yard for my dawg. If anyone knows of anything that may be available come Novemberish, lemme know. :) I hope all of you are doing well and that no one has painful kidneys. :) I'm sorry if you do. Love you all and I will write again in a couple days. :)

The End.

Fun Times with fun people

Today was a wonderful and fun day. One of the reasons and best parts is 'cause my good friendly K is here. How I heart K. She just flew up for the weekend. How nice was that? Yes. So, I am actually going to let her put in her two cents on this blab. How fun will that be? Yes.

 Well Hello! Today has been wonderful! I am so excited to escape the Boise heat and be here in beautiful Seattle with this wonderful young lady and her mother! This morning started off with us hurrying to get out of the house to make it to our boat ride! We boarded the boat at 930 with mom, Dani and B. We got to sail around Lake Union for 2 hours and we followed it up with a delicious lunch! After that we came home because Dani was exhausted. Come to find out we all were! Mom, Dani and I sat down and we all took a nap for a good hour and a half. It was so refreshing! Later we drove over to the Locks and saw more boats that were going from the sound to the lake! It was awesome! Then we went to a couple stores to get some yummy produce and some tasty treats for my birthday party that Dani and mom were throwing for me! When we got home, Dani zonked out on the couch while mom and I made dinner. Surprisingly dinner turned out pretty good ( considering my cooking skills) Needless to say, after all we have done today I'm pretty sure I have worn our girl out! I just love Dani and her mom so much and I am so grateful that I got to spend some time with them the last couple days!  So I guess that is all I really have to say :] -K

Isn't she adorable? yup. :) But she is right, the day has been wonderful and the weather could not have been more beautiful. :) She is also right that I am worn out. The past couple days have been very wearing. We have been running around to different stores and such to get K a bday present and groceries for her bday dinner. Which she really did, unfortunately, end up cooking herself. Ah well, it was delicious. Anyway, things are going really well with what the doctors tell me. Still working on weaning myself off of morphine. Ha ha... isn't it kinda funny, that me of all people is a morphine addict. Admit it, it's kind of comical. It's gonna take another week or so, but then I should be good. Anyway, since tomorrow is Sunday I will try to write a more comprehensive blab of the past few days. Right now, with exhaustion and a head-cake.... I must go. Love you all. :)

My new M.O.

It's seeming to be a pattern in my world lately that Mondays are awesome; we go to the clinic, get blood  drawn, talk to the doctors, this time even met with the nutritionist......... it was a great day. After those appointments, we basically chilled at the apartment still recovering from our crazy weekend. "". :) No really, Monday was the epitome of Mondays. One change was made to me medication, a simple one we thought. No more Morphine. I didn't think this was going to be a big deal since I have been on Morphine so long and it didn't REALLY seem to be making tons of difference anyway, I didn't have all that much pain I needed to manage anymore. :) So, Morphine goodbye. Now, to preface the rest of the story... I had been taking 15mg of slow release (meaning it releases over 12 hours) morphine for around 6 months. 6 months. of morphine. why don't we just stop that cold turkey. ok

So, to stick with my above said M.O. I was sick sick sick on Tuesday. Now I'm gonna get candid here. But I was throwing up every couple hours, diarrhea every hour or so, shaking like I had ants crawling up my drawers, couldn't sleep no way with stomach crampies to boot. Now, first thought to me was.... Man, can't I go ONE week without being ill for most of it!!! This is ridiculous. Then I thought, oh, great, last week it was just Magnesium, this time it's totally GVHD. Fun. Anyhooooo, after many hours of this pattern, we called the clinic and they had us come in to be checked. 

By the time we had gotten to the point of calling the clinic and going there, my mom had looked up the symptoms of morphine withdrawal and we were pretty sure that was the problem, but hey, can't be too careful in my situation so off to the clinic we went.

Turns out that none of my team was around, it being between 430 and 500pm, but the Triage Nurse helped us out and hooked us up with someone that could help. Immediately he tells us that I'm WAY dehydrated. Makes sense since I threw everything up or it came out the other way (sorry), but I needed to be hydrated STAT! So, down to the Infusion clinic I went and laid on a bed for 3 hours getting pumped with a liter and a half of hydration. We had done my hydration at home that morning, which is a liter, but even with that, I was way dehydrated. 

The doctor also agreed that the morphine could be playing a large role in the discomfort so shot me up with some fantastic anti-nausea meds and wrote out of prescription to help me taper the Morphine off over the next week or so. Brilliant. Hanging out in the infusion room felt WAY too much like being in the hospital, but because I have the most awesome mom that will sit there and read a book to me, the time was at least as pleasant as possible being miserable. Did that make sense.

Anyway, Woke up today a new person. It seriously was like night and day. No nausea, no diarrhea, no shakes. I had an appetite and energy. It was amazing!!! So, today, we had a long adventure in the Puyallup/Tacoma area.  We went and toured a placed called the Meeker Mansion. Beautifully restored turn of the century mansion. Lovely, that was very pleasant. Then we went to my sister M's house and chilled just for a bit. Got to see the little baby. She is so stinkin cute. Then off to a used store, Wal-Mart, and Taco Bell for dinner. Just got home a bit ago. Tuckered out for real. :) But, I will take days like today over days like yesterday, ANY DAY. Seriously.

Sunday Sunday......

So I have made a decision. Blabs are not going to come daily any longer. One, sometimes there really are days that NOTHING happens. Then there are those that are so exciting I could write for a couple hours. So, in order to keep you "comin' back for more" and not bore you to death, thus it hath been decreed. Don't expect a blog every day. I will try to not go too long in between them. Just a couple days at most so you don't think I fell off the face of the earth. And let's face it, I have to stay in every one's focus. Can lose that center stage spotlight right?? So, there will still be plenty of blabs, just less. More like it has been lately on accident. :/

So, on to information. Still feeling Heaps better than I did on Thursday the now deemed most recent "Nightmare Day". Things have been basically back to as normal as they get around here. I have been a little off of my morning schedule the past couple days due to sleeping in and that has been wreaking a little havoc on my system, but we will balance that out, no worries. :)

Yesterday was a pleasant day. Like I said before, I slept in, we chilled about the house. Ya know, the usual. Then we decided to go check out a little street fair in Lake City. It was fun! They had lots of fun booths with pretty bags and scarves and such. Good thing I'm broke, or I would have been after. There were a couple scarves that I almost drooled on. Ew, I know. :) After that, we went for a few groceries and some soaking salts for my poor aching feet and then returned home. I promptly prepared my foot baths and sat down and relaxed as my mother slaved away microwaving me a pot pie. :) Marie Callendars Chicken. Delicious. Granted I could only eat like two bites and then I was full, but we will so bring it out for lunch one of these days :) After that there was the evening scripture reading and then beddy time. I was exhausted!!!!! Not sure quite why, but wow was I beat!

Today, typical, beautiful 76 degree sunny Sunday with a lazy morning and church at 1:00. After church, which was fantastic, we came home and had a lovely meal of taco salad and grapes. Yup, I know you are all jealous. :) The grapes were tastilicious! Now, after I finish this blabby, I will lie down for a well needed Sunday afternoon nap. Yup. I'm a lazy lazy. That's ok though, my doctors tell me that's ok. :)

So, to end, as always. I just want to thank you all for your support. Lately especially. It's been a rough with the finances and the weird health and such as late, but you are all so lovely and I have received some amazing cards and well wishes. Thank you thank you. You are the best support group EVER!!

My Legs Hurt!!

Sorry for the lack of blab yesterday, but can I just say that I really really felt like HUD yesterday. Oh wow. Yesterday was one of the worst days so far. Please bless that there isn't a repeat. TO be candid, I was throwing up and using the "Lu" on a round the clock pattern. No joke. I was HORRIBLE. And to top that all off, I had to go to clinic feeling like that they so they all started getting nervous about it being GVHD. When my wise mother and I were pretty sure that it was just the new Magnesium supplement that I had started on Tuesday. That was because, starting Tuesday morning after I took my first pill form of Magnesium it was all downhill from there. Felt a little punk on Tues., more Punky on Wed. and then well yesterday was the culmination of the joy of magnesium. So, no more Magnesium pills, unfortunately, I was put back on IV Hydration. So, again, 4 hours a day I get to be hooked up to some lovely hydration with Magnesium. It's ok though. If I need it to make me feel better, then I will take it.
Today has been like a whole new world. Wow...... I woke up already feeling a bit better and hungry (which is a good sign) so, today went like any other day when I feel well. We hung out at the apartment for a bit, took the trash out, ate breakfast and lunch, etc... Then.... off we went on an adventure.

We went on a very fun and enjoyable walking tour of the International Section of Seattle. There were some really neat things all within a couple blocks from each other.

I loved this large gate. So ornate and beautiful. If only the care would have moved. :)

This is a snow lantern. Pretty huh? It might be a bit prettier without some of the graffiti on it, but hey, My mom and I thought it was neat. :)

This picture and the next........

are really neat hotel balconies that were built way back then. Such neat architecture. We were impressed. :) Anyway, so we wandered through this wonderful historic neighborhood. It was very good exercise and very fun.
Then, to top the fun off, right by where we parked, fate sent us a Greek Restaurant. Hallelujah. So, I convinced my mother that we needed to just pick up a couple Gyros on our way home. She had a chicken Shawarma. This being the first time my mother tries Greek food, I was a little nervous for her to like it. Guess what... She totally did. Whew. :) My Gyro was delectable. I'm so glad that my tastes buds are coming back strong.
So, now we are home, recovering from the Greek food and the amount of walking. I am SO glad that I felt so good today and that things look like they will continue going well. Hope all is well with all of you. Please let me know how you are all doing. email me at lifefordani@gmail.com OR dani.transplant@gmail.com
Luvs!

Wow, two days of no blogging, I totally have excuses :)

First excuse. Sunday..... totally forgot. woops. Second excuse. Monday, great fabulous day, but at around 7pm I was struck with a killer head-cake and that wiped all blogging from the task lists. So, I apologize, but hey, Whaddya gonna do? :) You guys still love me right?

Alright, let's begin with Sunday. Standard Sunday except for the glorious fact that I was able to make it through ALL of church. It's only been the first hour for the past couple of weeks, but I was determined this week that we would stay for all three hours and we did. :) I had missed those extra couple hours. I haven't been to a full block of church since mid-June. That's too long in my estimation. So, I was grateful for the opportunity to be there the whole time. It was a good Sunday and I learned a lot. :)

Then came Monday! Monday was fantastic. That is until about 7pm, but I already explained that. :) Monday morning I had a 730 am blood draw so I got up, put on a toque, and went to the clinic glorious pajamas and all. My mom just stayed home. No need to bug her for a blood draw. :)

Then, after I returned we prepared for the day by changing my bandage over my Hickman and hooking me up to my hydration. I settled in for 4 hours strapped to a backpack and the sound of a little pump while my mother ran away to Tacoma to meet my newest niece J and to help M around the house.

Around 1030, my mother's "relief" showed up. B. My bro. I was excited to get a day with my bro, he's great. So, for the first little while he just worked and I chilled on the couch as usually. Then at 145 we had a clinic appointment with the doccas. Off we went to that. I was excited for everyone to meet my bro. I like to show my sibs off when I get those opportunities. :)

Greatest news came from the clinic appointment. As recently normal, all my numbers and blood counts are looking wonderful! Things are going great AND I was allowed to be taken OFF hydration.!!! Woooot!!! No more plugging in for 4 hours a day to get a little saline water and magnesium pumped into me. :) I did have to promise to eat things that were high in magnesium and to continue to drink heaps of water, but that sounded like a deal to me. (Lately I've been drinking a gallon or more of water a day!) I was put on a magnesium supplement twice a day, but hey, I will take that alternative too. :)

After that we met with the Social Worker to see if she could be of any help with this Insurance "Situation". She was very helpful and we are applying for a couple different grants and she is getting a letter from my Attending Physician stating that they are the ones making me live where I live so my insurance she be paying all that they should. In other words, she was very helpful. :)

Once back at the apartment I ate some yummy lunch and B puzzled a bit then it was off yet again. We decided to wander our way to the Whole Foods about 1/2 mile from the apartment. Now, I know that Seattle is not anywhere NEAR as hot as the rest of the country, but yesterday was, I think, the hottest day we have had. The walk to and from Whole Foods was refreshing and a good one, but I think that my headache stemmed from the fact that once back in the apartment I couldn't cool down. We had our A/C running, ceiling fan, the works, but I couldn't cool down and then my head just started pounding! Grrrrr....

Anyway, back at the farm, my brother ate his sandwich he had purchased we chilled and watched netflix. All that excitement until he decided it was time for him to run home to his family. So, off he went, back I went to trying to cool down in the apt (actually got a quick nap in), and then my prodigal mother returned. :) By then I was "in the throws" of head-cake horribleness. We had dinner and then I laid on the couch until I went to bed. That was that.

Today, I had the fantastic pleasure to drive down to Tacoma to visit my sister and her family and meet my new little niece J. Can I just say........ she has more hair than me. Not fair. :) Nah, she is adorable. Of course, cause she's a baby. :) Now, while my mother, J and my sister M are all at a doctors appointment, I am going to lie down on the couch and take a nap. Wow. I promise I'm not lazy, I seriously just get worn out SO fast.

So, I MIGHT write again tonight if anything exciting happens, but if not, we'll try this again tomorrow. :) Luvs.

Saturday Advenutres

 Let's just start this entry out right.

Isn't that gorgeous? Yes. Well, this is how my mother and I spent a little of our time today. Here's another.

Ooooooooo. I like that bridge. So, my mom and I wandered through what is called the Kubota Gardens here in Seattle. It's this fabulous park with a zillion different flowers and paths and ponds and and and.........

I really liked these flowers. I thought they were pretty. Now, technically, I'm not supposed to be around flowers and plants and such, but we were told more specifically that I shouldn't "dig in the dirt", I refrained.

Look at the KOI. Pretty little fishy. Fishy Fishy in the brook, come on baby, bite my hook. This is a fishing song that my papa taught me when I was itty. It's never been really effective though. :) OK, another picture.

Isn't this quaint? I really loved this bridge as well, but walking over it was a challenge. Talk about steep on the way down. Ok, just one more then I'm done with pics, even though I definitely have more. :/

I thought this was a really pretty pathway. You could say that it spoke to me. :)

OK, seriously though, this was a beautiful peaceful place. We are going back. There was plenty we didn't see due to my feet starting to hurt. (Cursed medication). It was a nice afternoon. Although my madre and I almost melted. Now, I'm not saying it's hot in Seattle compared to the rest of the country, but having spent so much time in air-conditioned spaces, just being out in the sun is a challenge. Besides the fact that I'm NOT supposed to spend much time in the sun due to medications again. But we lathered on heaps of sunscreen and braved the sun. When A was here he asked me if I couldn't be in the sun because I would sparkle and people can't see me sparkle. I thought that was funny. :)

Other than the excursion to the gardens the day was a typical Saturday. Chillin' Although I did have a nice steak for the first time today. GO me. I am eating better and more diverse things. I heart that things are improving in that direction.

OK. that's about it from me. Some great wandering and chillin' make for a good day. :) ok, I'm ending with ONE more picture.

Pretty Tree. K. Bye. :)

So, I got me some bubbles..........

I received some well-timed bubbles in the mail the other day. I am now under the instruction that I must take said bubbles and shower them down on Seattle from the roof top gardens of the apartment building. Even my mom said she was game for that. Tee hee.... This could be fun. :) Definitely. One of these days that are so sunshiny and nice, I will haul myself up there and sprinkle the world with a little soap. Seattle needs it. :) So, thank you to W and C for the bubbles, they will be countless moments of enjoyment. :)

Beyond bubbles now, things are going well. I have actually felt pretty good today. The doctors put me back on a stomach settling drug and so far seems to be working. Still struggling with sleeping, but that's because I don't tire myself out enough. Momsy and I are looking forward to the walking tours of some churches and to the Kubota Gardens that are apparently free (bonus) and beautiful. SO, hopefully, tomorrow there will be some walking and mental stimulation all in one to tire me out. Yes, that would be good.

Today we spent the day going through all of my papers and such finding any documentation and writing a letter that may convince my insurance company to pay more for my rent. Have to pay rent again on the 1st and that depletes my funds. Literally, so, if they don't start covering at least MORE, there is a high possibility that my mom and I will have to find another place to live. Which isn't really easy since we have to live with 15-20 of SCCA. There's not a lot of cheap options. Wait, Cheap, CLEAN, SANITARY options. So, cross your fingers and pray with us that my insurance company will find our argument and supporting documents compelling enough to fork out some fundage. :)

After the great paper chase we chilled a lot, rested a bit, then spent the evening at a church event. They showed the movie 17 Miracles. Fantastic. All about the Martin Pioneer Handcart Company that came across the plains from Iowa to Utah with handcarts in some dire conditions and the miracles that were witnessed. I cried. Speaking of crying. I don't know what the deal is, I'm not on any hormone drugs or anything, but man am I emotional. Yeeeeeesh. I cry at the least little thing. TV Shows, commercials, etc. It's ridiculous. And I can't control it!!! The least little thing and Dani needs a tissue. Seriously, this has got to end. Hopefully my emotions will begin balance as my body balances. It would be a relief to think that I'm not gonna be a mess forever. Now, don't get me wrong, most of my crying has been over sad things, or happy things, or stressful things, but I'm not like depressed and crying to my mother about my trials. That would be goofy. Things are going great. :)

So, now that we are back home and I have taken my sleeping meds, I should probably go rest. I can get silly when they finally kick in, and we so don't want the "Blab" to witness me being silly do we? Nope. So, peace out. Good night. Love you all and again as I always say and will continue saying, I am grateful to you ALL for your love and support. Thanks heaps.

I'm an Aunt!!!!!

Ok, I'm an Aunt for the twentieth time, but it is still SO exciting! :) My sister M had a baby girl this morning. Hallelujah for a girl. We have 14 nephews and now 6 girls so its about time that we were closing that gap a little. Yeesh. My mother once told me that I had to make up the difference. I just laughed. There is NO WAY that I want to raise that many girls. um no. Especially if they are anything like me. Nightmare. So, yay for a little tiny niece. My mother and I went to the used stores today to find a few girl's clothes. My sister has had three boys last, so she has nothing for a little girl. Gotta help out right? :) And who can pass up and afternoon of looking at baby clothes. I mean, let's be honest here.

Speaking of spending the afternoon wandering looking at baby clothes, there has been a new development. So, I have this drug that I take to keep me from getting GVHD. While it certainly seems to be working, it is causing some interesting side effects. My fingertips hurt like the dickens under hot water. So, whether washing my hands (which of course I do all the time) or showering, when warm or hot water mixes with my fingertips, there's pain. weird huh. Well, here's the kicker. Now, the balls of my feet feel pain whenever... wait for it... I walk. Yah, what? It is bearable for a little while, but then I have to sit on my tuckus and wait for the stinging to stop. My doccas gave me some numbing lotion to mix with real lotion, but it's not working so much as of yet. So, to say the least, our adventures out and about today made my feet sting. It was more annoying was anything, but hey.

Let's see, what else. I found out today the results from my bone marrow biopsy and it turns out that all is looking good. Even though my marrow and bone are hard as stone, it seems that the cells are roaming around and doing the things they are supposed to. Awesome. So, according to the docca, my transplant went well and now we are just in recover mode. Gaining back my strength and dealing with my nausea, etc.

Speaking of gaining back strength, sadness to my soul, it is VERY hard for me to sing these days. I have NO breath stamina and no Diaphragm strength. But, give me time and things will be as they ever were. whether that is a good thing or bad, there it is. :)

OK, have we had enough information for the day? Hopefully, cause I'm drained and ready to lie down for a time. Tomorrow will be a nice relaxing day so I'm excited:) Have a good one everyone. :)

A day equals Awesome! You know who I mean. :)

Today was great!! Simply put, A was here. Happiness to my soul. It was a quiet day, but so much better for his presence. :) He came into town for an appointment and after that was over my momsy and I went and picked him up and we just hung out at the apartment today. He and my mother completed a puzzle while I rested and read aloud from "The Book of Awesome". We went on a couple walks. One actually on the way back from picking him up from his appointment. Then we walked from my 6th floor apartment down to the lobby. Totally counts as a walk in my world. Then we went upstairs to the rooftop garden for a nice sit. 

After lunch we just chilled and chatted. It was SO relaxing and so fun just having him around. Anyhoo, 

That is literally pretty much all that happened today. After we had some good chill time, unfortunately A had to be taken to airport to return to Boise. Just a quick one day trip. It was great though. A good day. A tiring day. So, short and sweet tonight, but that is it. More clinic appointments tomorrow so more info tomorrow. Love you all and still thank you for your continued prayers and support. :)

A Mixed Bag Day

Today had some fun times and some more stressful moments. Let's start with the stress and finish out with the fun. :)

So, from the beginning of this fantastic journey I have been very diligent in being in contact with my insurance company to make sure that I make no move or step that they won't pay the maximum for. In my insurance plan I have a Transplant Lodging and Travel Claus. This guaranteed payment of up to $5,000 for lodging while having a transplant. Now, having my transplant up here in Seattle at SCCA was, I checked, having my transplant in-network which means that once my out of pocket and deductible are met they pay 100% for what they pay. So, since my out of pocket and deductible have been met for months already, I never figured there would be any problems with the Lodging and Travel payments. Well, to make a LONG story short, we turned in our receipt for rent here at the Pete Gross House. I hadn't heard anything for a while so I called my insurance today. Turns out they are treating Pete Gross as an out-of-network facility and are therefore only paying a portion of the rent. Ok, What? One, if all of the medical things are happening at an in-network facility and you HAVE to live somewhere in order for those medical things to happen, and they have a transplant clause specifically for the fact that you HAVE to live in another city...blah blah blah.... I hope that made sense, but anyway. Two, I was SERIOUSLY counting on that full refund of rent. I seriously have been calculating EVERYTHING with the sure knowledge that I would get the full amount. Sigh. I guess that what happens when you are dealing with insurance companies. I did argue the point of out-of -network stuff and they are going to call me back in the next couple days. We'll see.

Now away from the stress to the few fun things from today. Well, first, sad, my papa left this morning. But I think it was good. He needed to get back to Pine Top, it misses him when he is gone. :/ 

Now, good things: My mother and I went on a nice walk in our neighborhood. We went and wandered around a very pretty Orthodox church near our apartment. It has the coolest bright blue doors. I loved them. I also had Hydrangeas of EVERY color. Did you know that they grow purple or pink or blue or a mixture of those colors just depending on the chemicals in the soil? Awesome! Apparently they don't grow very well in Boise. Sad, otherwise I would plant some just to see what color I get. :) After the wander to the church, we decided that we are gonna find lots of old churches in the city and try to explore them, they usually have beautiful grounds. So, new goal for the next couple months.

Later in the evening we had to go run some errands so off we went. I wasn't feeling so wonderful so I only went into one store. Of course, though, in the one place I enter, I manage to pick up a box of 90 crayola crayons upside down and they all spilled out. So, I spent a little bit of time refilling a crayola box. Not to mention this all happened right by the store's front doors so all could witness my folly. Good times were had. :)

So, that was my day today. Some stress, followed by stress relievers. All in all a good day. I hope all of you are having nice days lately. I would love to hear from you all. Feel free to email me. I love it. :)

Day 30!!!!!!!

Yesireee! Day 30 post-transplant. How fantastic is that? So. So Fantastic that is. :) Some days it feels like it has been forever and others it feels like it is speeding by. Well, only 70 more to go and I will be able to go home to Boise. Yay for Boise. :) I'm not complaining about Seattle at all. Rather the opposite, the weather!!! I will take this type of weather over what is happening all over the rest of the country. Yes I will. :)

So, today. The usual. Blood draw early followed by a consultation clinic with my doccas. Things are still going well, my numbers are great, etc etc etc etc....... Seriously, same info. :) Things are going well is the long and short of it. :) Not to say that knowing that is insignificant, but I feel bad telling you all the same things over and over.

So, today I am going to answer a question I was just asked. My donor. All I know about my donor at the present time is that she is a 19 year old female. I am not even sure where she is from or anything else about her really. I am glad that I was fortunate to have such a young donor. Having a young donor makes it less likely that there will be diseases or problems with the stem cells. So, that was nice. I do have to say though. I will forever be grateful to this young lady. I'm not sure that I even knew what a bone marrow transplant was when I was 19. Impressive. So, beyond that I don't know anything else. I hear rumor though that a year after the transplant, if desired, we can get our donor information. Ya know, to properly thank her and such. I'm not sure that I will get that info. I dunno. There is of course part of me that wants to thank her profusely. But then there is this part of me that if I were the donor, I would want to remain anonymous. I dunno. I guess I will make that decision later.

Anyhoo.... So, hopefully that answers that question. If not, let me know. :) Now... I am off to bed. It is late.

Funday Sunday

Ah.... Sunday. We all slept in late, we very mozy-ish about getting ready and went to church at 1pm. Again staying only for Sacrament meeting due to not feeling so hot, although, this time it was my father that wasn't feeling well strangely enough, we were home again by 230ish. My father rested while my mother and I immediately changed into comfier clothing. 

By 315, we were off to my brothers house for a nice evening of conversation, food and fun. The trip to his house took us a good 40 minutes and let me tell you. After the car trip yesterday and driving around the island and such, I am done with vehicle trips right about now. I do have to admit that everywhere we have gone has been absolutely gorgeous, but still, I'm done. Thankfully we don't have any car trips planned again soon. :)

At my bro's we had a delicious dinner. He had asked me what I wanted to eat since my eating is so sporadic as to what tastes good. I just said that as long as he had creamy mashed potatoes somehow involved with the meal, I would be happy. Well, it turned out I was happy with all of it. Yummy Chicken Fried Chicken, Creamy Mashed Potatoes and a scrumptious country gravy. Of course I wasn't able to eat all of my portion, but I did eat enough to feel like I had just finished Thanksgiving dinner. I was stuffed. :) After I rested a bit and let my stomach deal with the meal, B and I went upstairs where he demonstrated his FANTASTIC piano skills. He is so silly sometimes. All nervous and such, but really he does a great job. :) 

Post concert, B and I dueled it out at Phase 10 Twist. He schooled me. While we played, the other B cleaned the kitchen, Momsy chilled in a chair and my father fell asleep on the floor. All in all it was like old days at home with the family playing games on a Sunday night. So great. To say the least though and to be a complete broken record every day...... I'm toast. It has been an adventure filled weekend and now we must rest well because I have a blood draw and a clinic tomorrow. I want the doctors to still be VERY impressed with my improvement.

I didn't do the blog post Bone Marrow Biopsy, but I just wanted to reassure that all is well. I am feeling great and can BARELY feel the incision anymore. One thing though about the actual procedure....Not sure my mother mentioned this. There was one point that I was feeling a little pain because the Tech had to drill REALLY deep into my bone in order to get any. So, in order to distract myself from the fact that my right leg felt like someone was drilling into it, oh wait, they were, anyhoooo, in order to distract, I started singing I'm a Little Teapot. Yes, I did and let me tell you, it totally worked. You should try it some time when you are either in pain or feeling anxious, sing I'm a Little Teapot. Amazing. I guess it DID help that the other Tech in the room did the actions where I could see him. That helped yes. :)

So, I'm feeling well, just a little tired, things are going great other than in the financial section of life, but when IS that going well. Things will be as they will be eh? I am so grateful for the help and love that I receive from all of you and my other friends and family. There is no way that things would be going as well as they are without that. You are all wunnerful. :) Luvs and Hugs and Good Night.

Ferry's are so fun. :)

Today was definitely the day for adventure. Since my father is here we decided to hop on a ferry to Bainbridge Island and go sightseeing a bit. Now, when we say sightseeing, we mean driving and looking at gorgeous nature. We are SOME TIMES ones for the touristy things, but on the whole a drive around on a beautiful island is quite fun. :)

So, we slept in this morning and took our time getting to the ferry. Once in line for the boat we did have a bit of time to wait and all of a sudden I realized we, yes me and my two parental units, were having a conversation about Fairy wings. If any of you know my father you can probably see the connection between waiting for a Ferry and Fairy wings, but the funny part was that we literally spent a good two minutes discussing, seriously, Fairy wings. Yah, we are a strange bunch. :)

Once on Bainbridge we got a full day of beautiful island. We went from one end to the other and off to the sides as much as possible. :) This island is so lush and beautiful it's hard not to fall in love with it.

One little side adventure, while in search of a place for dinner, we stopped at a Casino and Hotel/Spa. I believe my father was thinking that usually the Buffet at Casino's is usually inexpensive, forgetting that I can't eat at Buffets. There was another couple restaurants in the Casino as well, so we sauntered in just to check out the prices of the eating establishments. Now, me, Dani Coles had never been in a Casino. Nope never. Quite the eyeful of people that look very bored but unable to leave. :) I did get a dollar from my father though and play a nickel slot. No judging. I didn't win anything. Total loss, except for a little bucket list check mark. :)

Anyhoo, we ended up eating some Southwestern food in Winslow. Well, I ate like 5 bites of my food and I was full up, but it was yummy. :) Then back onto the Ferry returning to Seattle. We came home and I immediately took a nap. Now, it is time for family scripture study and prayer and then back to bed. Even though most of the day was spent in the car, I'm toast, just from the long all day outing. Toasty Toast. :) So, good night my dear friends and family and we shall hear more adventures tomorrow. :) Dinner at Bs.

Oops! Again.

I blew it again!  Dani asked me last night if I would do the blog as she was very tired, and I agreed.  Then....I didn't do it.  Went to bed instead.  Oh, well.  It won't be the last time I am slow at something.  So here I am, bright and early this Saturday morning with an update.

Dani had her 28-day bone marrow biopsy yesterday morning.  It took a while because apparently her bone marrow is still the consistency of cement.  They actually did not remove any marrow but were able to get a piece of bone, and that's what the doctor's wanted to check.  This is to see if the stem cell transplant actually worked, and is destroying the cancer cells.  We will get the report on Monday at her clinic. We know that her blood type has changed to O Postive, because when they gave transfusions while she was in the hospital that was the type needed.  The report will confirm that we are indeed on the road to complete recovery!

The day started out with an early blood draw, then the biopsy and then we had a few hours before our consultation with the nutritionist so guess what?  There were a few naps taken!  The consultation went very well, she was pleased with the food Dani is consuming, and that she is trying new things each day.  She had a Rainier cherry yesterday morning and pronounced it delicious.  And big move forward...water finally tastes good!  Hooray! Day to day her taste buds seem to be coming back to near normal and we are very pleased about that.  Mashed potatoes remain a staple, with sour cream mixed in, are always a treat for the pallate.

In the afternoon, Vic and I went off for a while on our own, while Dani... took another nap!  We finished our jaunt with a trip to a Chinese restautant, and brought home some orange chicken and fried rice.  We are very glad to have Vic here for a few days, he has been able to meet the doctors and nurses at SCCA, and just spend some quality time with the two of us.  The plan for today is to take the ferry to Bainbridge island to do some sightseeing and then come back and relax.  An update on that will come later.  Sorry about the delay, more later.  Bye for now.

MOM