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.