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

Quite the active day.... I'm toast

Well, after two days of not much going on, today was FULL. I started it out with a blood draw. I went all by myself. Yay me. Nah, since my father just arrived this morning I thought that I would just let him get settled in and let my mom hang out. It was a quick blood draw and then I walked home from the clinic. A nice brisk walk for the morning. It was nice. It was misting a little, but still really nice after a couple days of not much movement. So, I was only gone for about 20 minutes total for the blood draw. Then immediately, we all decided we needed naps. My father apparently hadn't slept well last night, my mother had to get up somewhat early to get him at the airport and me, well, I'm always up for a nap. Especially after a walk. So, naptime it was.

Our next appointment was at 1:00 for a clinic with my team of doctors and nurses. I just want to say that I heart my team of docs and nurses. I am especially glad that Dr. F stayed my provider from the hospital to the clinic. Apparently that is not a common thing, but I sure am glad things worked out in my favor. I think I have the best team at SCCA possible. You can take that to the bank. :)

So, our clinic meeting went great!!!!!! They lowered me to one bag of IV Fluid again. Apparently I am drinking enough finally. Whew. They say that my counts are still going up, not as quickly as before, but still holding on and doing well. Yay. They were debating about having an Endoscopy done to check for GVHD, but after all the good things I told them I have been eating and drinking and such, they decided not. Whew. An Endoscopy is when they send a tube camera thing down your GI to see if all is well. I hear they are uncomfortable. So, that is a good decision they made. :)

So, once the clinic was over we fled like thieves to go home. We walked home. Again, it was a nice walk and the first time that my father has traveled that little mountain. So, again, once home....naptime. I love this. Naptime is so necessary. Actually I think that my mother started putting a puzzle together. My father and I chose the slacker life. :) This time I napped for a couple hours though. Which isn't normal. I take power naps usually, but this felt good.

Then, we were off to the grocery store. Ok, three stores. To say the least walking from the clinic twice today, then wandering up and down most aisles at three stores, I over did it. I'm ready for another nap, an overnight nap. 

As you can see, an active yet awesome day. I have felt well most of the day. My papa is here. That's pretty much the best thing ever. And tomorrow I get to have another bone marrow biopsy. Wait. I was listing good things wasn't I? Ah well, It might hurt a bit, but it will be a good thing to know what stage my cancer is. Just pray that it is in a better state than it was and I won't have to do this whole thing over again. I'm not quite sure I could handle that. So, tomorrow will be an early morning with and early blood draw and the biopsy at 8. All will be well though. Things have being going so well, that can't stop now. :) I know that all things are in the hands of someone who knows more than I, but I can pray that things just continue on the good road right? Right. :)

So, now I am off to eat again, I know it's way late right? But I must take some pills and food is imperative. Then off to beddy by for that overnight nap. Tomorrow will be another adventure that I will be sure to tell you about. :) Buh By.

Two days of chilling..... Sigh

The past two days have been ever so calm. I haven't felt the bestest ever. Well, actually, yesterday wasn't too bad, but today I have just felt punk all day. :/ Isn't that lame. When you don't feel well, but you can't just pinpoint the problem. Aw well, it's almost bed time then all will be well right? :)

Nah, neither today nor yesterday did we have appointments or blood draws. We literally just got to hang out. We watched movies, worked on a puzzle, went on a walk, etc. Ya know, those kinds of things you do when it's not the smartest thing to be out and about with all the germs in the world and you are totally broke. We make our own fun around here.! Booyah! 

Big news though, my papa is gonna be here tomorrow!!!!!! He's coming to visit until Tuesday morning. I'm SO excited!!!! I feel like I haven't seen him forever! I heart my papa heaps.  We do have some appointments tomorrow and Friday, but my papa needs to experience that as well right? :) Friday is my next Bone Marrow Biopsy. Always a fun time. So, he will be around for a few appointments and get to meet "the team". I think he will enjoy meeting all of them. He's such a people person. :) Yay for papas.

So, other than the anticipation of seeing my dadsy and hanging with him, there hasn't been much excitement in the past couple days. Just working through me not eating very well, although it's better. Working through my drugs. They are so plentiful and kinda make my stomach rumble.... :/ That's about it. 

Lastly, I've gotta go serious for a minute. My mom and I have been reading the scriptures together every night and can I just say??? Love it. I can tell a HUGE difference on those days that we read and discuss the scriptures together and then have family prayer. I just wanted to tell you all that I know that our Heavenly Father is looking out for me and my mine. I appreciate all the prayers that I have been getting from all of you. It's the truth that I can see the difference those prayers make. 

Anyway, I need to go do JUST that right now with my mom. Scriptures and prayer and then bed. So, love you all and thank you all.

Double the Wha???????????

So, it turns out that I'm not getting enough hydration. What? I swear it feels like I drink gallons a day, but alas...... apparently I do not. So, today at my clinic appointment they upped the hydration from 1 liter a day to 2 liters a day. Which means that I have to be hooked up to the little pump for...wait for it..... 8 HOURS a day. That's a full time job. I asked Dr. F. why he hated me, but he said he was actually just looking out for me. As if. :) jk. So, for the next three days at minimum I get to be that girl that has a backpack with tubes all hanging out all over and this little sound that follows me around. That would be the pump. I'm not really complaining, no. I'm just saying..... I totally thought I was drinking enough. Ugh. I'm a slacker.

So, well, today we had a blood draw, clinic with the doctors and a meeting with the dietician. She helped us come up with some great ideas of food to try since it is such a hard thing for me to eat. I'm always full AND food tastes like dirt. So, it was really nice that she could help come up with some ideas of what to eat to get the most out of little amounts.

After the appointments, we walked home, which was fantastic. I enjoyed that, but it wore me out. Since then, I have been chillin' and napping while my mother ran away to the grocery. Now, it is Psych on Netflix time and all is well. I think that is all I have today. Yup. :)

Sundays are great. :) Really

This Sunday was quite a good one. Lovely even. I only threw up once. :) Bonus! Sorry, gotta give the details I've been told.

Today was nice. Woke up bright and early, showered, hooked up to my IV Fluids for 5 hours, yum, then ran away to church. This was the first time I stepped foot in a church building for a month or better and it was wonderful. The Bishop remembered me and said I was looking good, me in my "do rag". However, I could only handle it for about 45 minutes and I had to come home and lie down. It's amazing to me what wears me out these days. Granted I was very sleeepy due to some medication I had taken right before going to church, but still, just sitting up in a chair for an extended period of time wears me out.

Let me tell you, I am Dani Coles, ever going ever doing girly. One of the most frustrating things about this whole process is the weakness. Two types, literal, I can't open my drinkable yogurt bottles. Shaming. Second type, also literal I guess, but 15-20 minutes of LIGHT activity, like moving, tuckers me right out and I have to either lie down or go for full nap mode. So, I actually say that 45 minutes of church was a triumph! Go me. They tell me though that I will eventually be able to keep up with my old self..... Just give it 3 YEARS or so. No really...

Now, I'm not really complaining, ok maybe a little, I'm just saying, that mentally, it's still me and I feel HORRIBLE that I have to ask my doting mother to open a yogurt bottle. I feel bad that she needs to be pausing her life at all to hang out with her 32 year old daughter that should be able to and has been able to for YEARS, take care of herself. But small tasks like picking things up off the floor. Preparing a can of soup, sneezing. Make me tired. Ugh. Enough on that subject.

Sunday's are also good for puzzles. My mother and I are working on a mystery puzzle. One that has a mystery in it that you have to solve. Difficult, but fun. (Again, I personally only worked on the puzzle for about 20 minutes before I had to lie down, but I have all intentions of returning.) 

I have also, FINALLY, been getting to thank you notes. I have been such a slacker in this area. So many people have contributed and helped out that ya'll need to know how I feel about that. Especially now that I have been here a bit and realize how truly expensive everything is. Not just Seattle itself, but just how much my insurance does and doesn't pay. Makes one stress sometimes, so I try not to think to long and hard about that part. It makes me need a nap. (yet another thing) :) But hopefully, I have everyone's mailing addresses so I can send you a thank you. It is SO important.

So, other than naps and weakness realization, today has been great. Very peaceful. As Sunday's should be. Got to have a great conversation with the fabulous T. Always nice to chat with him. He brings a certain calmness everytime I talk to him. He probably doesn't know that, but it's true.

So, now, It's time to take another NAP. well, here in about an hour it'll be a LONG overnight nap. So, I thank you all again for your love and support and we will see you on the flipside. :)

Saturday....

It's nice that no matter what is going on in your life, there is just this feeling about Saturday right? It just feels like the day where nothing HAS to happen. You can just chill and all is well. That is how I felt today on the whole. It was mostly an even-keel uneventful day. Minus about an hour.

There was this one period of time today that I had the bestest opportunity to chat with a few of my favorite people on the face of the earth. It was so nice just to hear their voices and to hear some quick updates on what is up with them. I love my friends. Yes I do.

Other than that.... the day has been both rough and just plain boring. Again, a candid moment. So, now that I have been a month through all this crazy chemo and transplant it's time again for my "cycle". Sorry boys, I gotta talk about it. Come to find out, my body will go through the signs of a cycle without the actual cycle. Cramps, hot flashes, all the good stuff, but no relief. Just my body going through the motions without anything to release. OK, that was very candid, but I was in some major pain today. I tell ya, ladies be grateful for your cycle. I finally got to take some Tylenol and it quieted down. But not till after I threw everything up I had ever eaten. Which of course was like a fruit cup and a jello cup. ugh.

Gentlemen, you can now read on...... Speaking of the food. This is getting ridiculous. Were I ten, I would be in heaven living off of jello, pudding and fruit cups. Really. But I consider myself a type of a "foodie" and boy do I miss food. My stomach churns when I think about food (and not in a good way), but I sure miss food. This mucositis couldn't go away faster.

Last night was fun hanging out with B&B. We played Phase 10 and even though I could only manage about 8 phases before I needed to lie down, I kicked some booty. That's right, Phase 10 Queen! It was Super fabulous just to see those two. They are SO great. Love them. AND they brought me this awesome book called "The Book of Awesome". I'm not kidding. You should all check it out. Thus far I'm loving it. :)

K, well, My momsy and I are off to acquire more pudding and jello cups so I should be off. Love you all heaps.

Um....I am such a slacker.... yes I know

So, really there was this thing that happened yesterday that is called a brain lapse............ Hence no blab. Sorry. But, here's a twofer for today. Twofer.... ha ha... remember when burger joints had "twofer" deals. like they actually called them that... awesome.

Anyhooo.... your twofer today is just two days in one blab entry. yay for fun.

So, yesterday was my first day back at the clinic. Not too busy, just a blood draw and then a meeting with my "team" so they could check me over and make sure that I was really ready to be out and about. Full clearance. I am apparently doing SO SO good. Wish that would manifest more in the way I feel all the time, but patience is key I'm being told. One bright spot of the team meeting was that Dr. F, who was my practitioner at the hospital for the good majority of my time there, is now my Dr. here. I think I wrote about him before, or maybe my madre did. He is the one from Costa Rica. He's hilarious. So, that was fun to have the same practitioner. Consistency is a good thing. Anyway, they tell me that I have great "numbers". 

Numbers...... Let me esplain. Everyone has a certain number of blood cells in there body. Thousands of white and red blood cells, platelets, etc...... Going in to this whole process I had high numbers just like every other healthy human being. What happens is, during chemo and such your numbers fall. Now, for the reasons of transplant, they WANT your numbers to fall to zero. Cause then the new stem cells they give you will not have to fight for space. They can move in with their little suitcases and dress bags without too much argument. So, my numbers dropped down to zero and I had to have a couple platelet transfusions, but that is all and well, totally the purpose. Then, after the transplant, my numbers actually got larger and larger quite quickly.  My white blood cells (specifically my neutrophils, which are a type of white blood cell) are back up to the point that I am fully engrafted. Engraftment is when the stem cells you are transplanted with start creating blood cells. So long story short, my numbers are awesome and my body seems to be accepting my transplant quite nicely at this point.

Now there was some mention in one of my mother's blogs about GVHD. This is a diseases called Graft Versus Host Disease. This happens after a transplant when your body fights the new cells. I mean really, like your body isn't going to notice when they transplant a new person into you..... Dr. F. called my Neutrophils my Marines. It's a good thing that I have so many since my transplant so if my body decides to fight the new stem cells, the new stem cells will so win. Well, we can hope. I have not gotten GVHD yet, but they say that 75% of transplant patients do get it. Whether bad cases or mild cases. So, that's one thing we are watching out for right now. We can always pray that I will stay in the "unique" realm of the world and just skip right over that part of the transplant process... Yes? Yes. That would be nice.

Anyway, enough of that. If there are questions, let me know. After the meeting at the clinic my mom and I chilled for a bit, checked out the roof top gardens here at PGH, ran to a few stores and then home to crash and burn for the night. I get SO worn out SO quickly these days. Today we had an early blood draw and then we came home. I do have to still be hooked up to IV Fluids once a day for four hours every day, but it is easy. We just hook me up here at home and put my infusion pump and the fluids bag in a backpack so I can run around and do whatever while I am hooked up. It is much nicer than being hooked up to that big tall tower of metal like the one at the hospital. So, I was hooked up today for four hours and now momsy and I are watching My Fair Lady. Love. B&B are coming over tonight to play some games and just generally chill, that will be fun. Other than that today is just a hang out day. That's enough for today don't ya think? yes. k.... buh bye.

Freedom Freedom, yes I got a lot of Freedom!!!!!

That little ditty was sung to to the theme song of "Beat it" from the great MJ. I thought since I had "beat it" from the hospital today it appropriate.  Yup, you read that right. I'm OUT!!!! Around two pm today they unhooked my last tubing and said goodbye and that they don't want me to come back. They meant that is the nicest way possible, meaning that they hope nothing goes wrong enough that I would have to go back to the hospital. I tend to agree on that point. No desire here to have to return any time soon. Can you believe that I just spent some odd three weeks in a hospital. That just makes me gag just thinking about it. Tonight will be the first night in so long that I won't be woken up 15 times for vitals, or blood draws and medications......... I mean really. They say that rest is the best medicine and yet..........

OK, so now for some pictures. I received SO many wonderful notes and cards throughout my hospital stay that we had to hang them up all around my room. Well, since I left today all those cards and notes had to come back with me and my mother decorated my bedroom here. So, here are a couple lovely pics.

This one is of the window in the wall of my bedroom here at Pete Gross House.  Lots of cards and notes and one giant fantastic banner made by my J&H Family. And since I cannot have real flowers, my loving mother got me  a GIANT tulip balloon. I wish you could really see it up close. It is the coolest thing and HUGE!!!!! So perty.:).

And here are more cards and notes around my closet here are PG. I can't tell you all the difference it made in my hospital room to have all these notes and kind words all over the walls surrounding me. I certainly was better off for it. And I am SURE, if you WANT to send more happy notes and such, They would just add to the joy. 

Well, even though I'm out of the hospital I am still a LONG way from recovered. For example, just the ordeal of leaving the hospital and a small trip to the clinic for a few minutes was too much for me. So, that being said, I am hanging up my lappy top for the night. I know I know.... It's way early, but hey, I'm wiped..... Love you all so much. Honestly could NOT have made it through that hospital stay without each and everyone of you. Just know, I won't be able to do the next 3 months without you as well,,,, So, till tomorrow. I'm sure we will have more fun updates. :)

So, what is this thing that I'm writing on again? A Blab...????? Hmmmm.

like it has been forever since  I wrote on here. My momsy has been doing such a magnanimous job that I was thinking of retiring all together. Just kidding. She has been a blog lifesaver, but to tell you the truth I have missed it a bit. So, on with my entry today.

Biggest news ever, there is a HIGH possibility that they are releasing me from this medical facility TOMORROW...... Yup, you read that right. Now, I'm trying to not get my hopes up tooooooo mucho because it still could be a couple more days. But as soon as one of the doccas said that this morning, I told her that I was gonna hold her to it. Tomorrow or bust right? Nah, I will be OK if it a day or so later I suppose, but how much would I love to exit this place?. YES. Not to say that everyone hasn't been amazing, seriously, I think that I have lucked out with nurses and providers. They are all so upbeat and nice.

Next thing I gotta say. There were a few things that saved my sanity while here in the medically large and spacious building. Of course, all of the cards and greetings and notes and gift boxes have been immensely appreciated. I can't say that difference that have made on the walls of my hospital room. My mom has been diligently taping every card or note to my wall. Everyone comments on it when they come into the room.

Then, there's my Kindle. My co-workers all banded together a gave me  a Kindle as a "go-away" gift. and yes, I meant to say go-away gift. :) nah, but this little book reader has been amazing. when reading was too much It would read to me. Kinda like having even more company in the room with me.

I'm exhausted. Really, I could just sleep the day away, but then there would no sleeping at night and that is the worst. I have taken a couple naps today, but I'm done. Its too late, I won't sleep later. Well, I know I didn't write a whole ton, but I'm done now, I going to go stroll through the halls. Love you guys. thanks again for everything.

Sleep, sleep, sleep

Dani slept 8 hours last night!  She was so refreshed this morning.  The doctors are very pleased with her progress.  Apparently she had a very severe case of mucositis and it did extend from her mouth clear to her b
um, so they think the discomfort she is experiencing now is just that still hanging on.  They say her taste buds have been damaged and it will take a few weeks for them to start to work properly again.  So she is to steer clear of her favorite foods for a while, so that she won't hate them later.   

They say we may get to go back to the apartment sometime this week.  Keep all your fingers and toes crossed!  She is very excited and we even talked about some things we plan to do when she feels like it.  She said "Can you believe we're making plans?" 

We have visitors today! M and S from Tacoma have come to see us here at the hospital.  It is so good to see them.  M's baby is due on the 28th and we will have 20 grandchilldren!  What a wonderful  blessing! 

She had applesauce and grape juice for breakfast this morning, and mashed potatoes and gravy this evening.  They have taken away lots of her IV stuff and changed her to oral medicines.  That is progress toward leaving here.  She thinks 3 weeks is plenty of hospital time!  

That is All for now,

MOM

Good Day! Good Night?

Today has been a GOOD DAY!  Dani has felt pretty well, ate about half a bowl of cream of wheat, drank a swallow or two or cranberry juice, and ate half a banana in the morning part of the day.  There's only one problem.  Apparently everything tastes like DIRT!  Yep, you heard me.  DIRT!  Oh, well, we are hearing now that the mucositis that we thought was gone, lingers on to cause these fun developments.

We walked 7 times today, and she rode the bike for a few minutes.  She was determined not to sleep a lot so that hopefully she will sleep tonight, so she only took two short (30 minute) naps during the day to rest up from all that exercise.  Later in the day she ate a few spoonfuls of chicken noodle dirt and worms, along with a saltine cracker that about sent her into upchucking.  But she got some down and it stayed there.

It it now 10 p.m. and the time she has decided to go to bed.  So here I sit, typing along as she settles in for the night.  Hopefully it will be a peaceful one.  Her numbers are wonderful, she is actually fully engrafted, not to say that lots of her blood numbers have a long way to go, but the new blood is taking hold and doing its job.  In fact, part of the distress that she is feeling may just be GVHD.  Probably there will tests tomorrow to determine that for sure.    Today we are satisfied and on the road to recovery. 

More later

Bye for now

MOM

New Pictures!

It has been a LONG time since yesterday mid-afternoon.  I left the hospital to take the shuttle at 6:30 pm and Dani seemed to want me to stay so I asked if she wanted me to get the car and come back.  She said "Only come back if you want to come back."  So, guess what I did.  I came back.  I arrived back at the hospital about 9:30 pm and by then she had had diarrehea and vomiting at the same time, THREE TIMES!  She was miserable!  I had come back with the intention of staying until she was settled then heading back to the apartment, but that was not to be.  She asked me to stay so I did.  Needless to say, neither of us got much sleep.  She was not running a fever, and about 2 a.m. she discovered that she could swallow and took some medicine by mouth with some ice water.  That should have been cause for celebration, but she felt so badly that we just got a quiet HOORAY. 

Today has not been as bad.  No throwing up and the diarrehea seems to be under control.  In fact she has had two walks, and even rode the stationary bicycle in the hallway!  She also has eaten a small container of jello and had some 7-up.  So we are doing well now.  The nurses have been diligent about bringing in nausea meds every 2 hours.

The doctors came in all excited this morning to tell her how good her numbers were and they felt really badly that she felt so miserable.  So blood numbers are great, there is a chance this was the GVHD that we have been expecting, but they could not be sure because there is usually a skin rash that accompanies it.  They will do a test in the next few days to find out for sure, and if it is GVHD, they will treat her with steroids.

When she felt better this afternoon, we shaved her head again because the hair was falling out, so I am attaching a picture for you all.  I picked out a cute knitted hat for her from the basket of them that volunteers make for the patients so she has that on because her head was cold.

Hopefully tomorrow will be a more pleasant day for Dani.  If she can begin to eat food (food being jello, popsicles, water, etc.)  she will be closer to being released.  She is currently taking a nap, her first in several days.  That's all for now

Bye for now

MOM

UP, UP, & UP!

Dani's blood counts were up to 490 this morning, and soon the mucositis will be but a memory!  In fact, I've been told by many, she won't even remember that much of it.  Great, huh!  She still can't swallow anything, but the doctors were saying that when she can begin to eat some, she can go back to being an out-patient and escape from the hospital!  Hooray! 

I keep talking about how beautiful it is here, and rubbing it in about how it's only in the 70's, so I will put my pictures where my mouth is and send along some pictures out of the hospital windows.

This one is actually from Dani's room.  It is lovely, but the blinds don't go up so I went down the hall to take the rest.  You can see all the things I took pictures of out of our window.



The thing with the towers is Montlake bridge, and it is a draw bridge.  Over the long weekend, it opened and closed many times to let boats go through from Union Bay onto Lake Washington.  The last picture is actually across the hall from Dani's room.  That is Lake Washington past the construction area by Husky Stadium.

We did the Fancy Nancy puzzle today, Must admit we got a bit of glitter on the floor.  The cleaning lady will wonder what we've been up to,hee, hee. Our patient is getting very IMPATIENT.  She thinks 3 weeks in a hospital is not her thing!  Progress is being made, she is getting ornery again.  Have a good evening all you wonderful people.  More later

Bye for now,

MOM

Progress - Some

Yesterday there were two pieces of news.  One; the rest of Dani's hair is beginning to fall out.  And two;... she has 10 neutrophils.  Those are whitle blood cells that fight off infection.  Thats a good thing.

Today, her blood count was up some more, we don't know how much.  Mucositis is still with us, but today she seemed more alert, less nauseus, and we even played a game of dominoes.  She won!! That and three walks was the total accomplishment of our day.

She asked me one favor just before I left today.  She said would I go and tell the nurse she wanted an extension for her bed.  I hate to make her talk too much, so I went and asked.  Sure enough, in about 5 minutes a man came from engineering and took off the footboard of her bed, added a metal extension, replaced the footboard, inserted a cushion, and voila!, her bed was a foot longer.  She isn't so tall, but she needs the head of the bed, nearly straight up so that she sits up since she can't breathe very well with the mucus in her nose and throat, so it puts her down further in the bed.  The extension allows her to stretch out completely.  She seemed to relax.  I hope so.  She is very tired, she hasn't really slept in several days.

More cards were in the mail tonight.  Thanks to all of you, they do brighten what has lately been a long day for Dani.  She talked more today, but then, who's surprised at that!  She can't be quiet for too long!   We do appreciate all your prayers and good wishes.

It's late so I will go, maybe more good news soon.

Bye for now

MOM

Same ol-same ol - Ditto - Repeat

Today was a duplicate of yesterday and the day before, but maybe a little worse.  We are at day 10 today and before too much longer we should start to see her new blood start to engraft and then the mucositis will leave.  The nausea is still with her, but at a low level.

According to the doctors, everything is going as it should.  No fever, all her vitals are just perfect.  She is just miserable.

I picked up three cards in the mail tonight and I will take them with me to the hospital tomorrow.  She will be very excited to see them.  Thanks much.  I'm sure that she will be on top of this in the next few days.  In the meantime we will keep on keeping on. We are grateful to be here where we are getting the best medical care so that in the near future Dani will have a future.'

We have a nice place for her to recover here at Pete Gross house.  Maybe I'll post some pictures of our apartment here when it is daylight.  No more real news, just day to day for now.

Bye for now

MOM

Happy Fourth of July!

Happy Independence Day!  It is beautiful here today mid 70's and sunny.  We can see Mt. Ranier out of the hospital window today!  The doctors suggested that Dani put her head on the other end of her bed tonight and watch the fireworks through her window.  We will see if she wants to watch anything at 10 pm tonight except her pillow.  The pain is some better today, they finally got the medicine dosage strong enough.  She is very sleepy though.  So she has spent a great deal of the day sleeping, but she says she snores and wakes herself up.  Funny, huh!

I met a woman today whose husband is 73 years old and just had a transplant!  He is the oldest person they have ever given one to here, but there is a new experimental procedure that they used.  He is at this point free of lukemia, but has an infection.  He was very healthy before the lukemia, he biked 15 miles a day and swam laps.  So they thought he would be healthy enough to have a transplant and so far, it seems he is doing well.

Hopefully just a few days from now, Dani will begin to engraft and start to feel better.  We are holding on, and looking forward to that.  She has one more does of methotrexate on Wednesday, that is a chemo, but it helps fight GVHD.  It may make her nauseus but they are getting a better handle on that too.  So maybe by the latter part of the week, she may feel a lot better.  She doesn't talk at all, she is using her sign language, which unfortunately, I don't understand.  I try hard to ask "yes or no" questions, so she can just nod or shake her head.  The nurses are great as are the doctors.  They are used to listening to people who can't talk because they have mucositis. 

Hope you all have a wonderful 4th of July and remember how blessed we are to live in this great country.  Thanks to each of you, more later.


Oh, I forgot, someone wanted the physical address again.  It is 525 Minor Ave N, Apt 601, Seattle, WA 98109
Bye for now

MOM

Sunday/funday - Or Punk Day

The doctors came in today and told Dani that this was the part of the hospital stay that they call "punky" when you really don't feel well at all for about a week.  Horray!  We're on day two of that!  She asked if she could dress like Punky Brewster, but they didn't encourage that, but we had discussed the colored stripes in her hair, that's pretty punky, right?  Her throat is really hurting, the morphine didn't seem to be doing too much, so they have changed her PCA to something called dilaudid.  It is supposed to be stronger than morphine.  It has made her sleepy, but we don't know yet how it affects the pain.  They have hooked up a suction wand for her.  It's kind of like what the dentist uses to suction your mouth while he is working on you, but she says it helps get rid of some of the mucus.

So, we are here enjoying the beautiful scene outside our window and suffering in silence.  Unfortunately, only Dani is suffering.  I feel just fine.  There is only so much to be done, and the nurses and doctors are doing it. 

I talked with a woman in the family room here at lunch time today.  I noticed they have a cot in the room and that someone is always with the patient.  I asked if they were staying at night, and she explained that she and her 19 year old son are here with the patient who is her 21 year old son.  He was diagnosed with a rare form of caner just before he turned 19, and has been under treatment for the last 18 months.  He will be having a "Tandem" transplant, his own cells will be harvested and given to him and then he will recover from that for a while and then he will have a transplant with his father as donor.  I guess we don't ever have to look far to find someone with more problems than we have.  We feel very positive that Dani will recover from this process and hopefully never have to go through anything like this again. 

The Elders quorum president and his wife came by again today and made sure we got the sacrament.  I asked that the bread be broken into "tiny" pieces, and she did swallow it and a bit of water.  That means a lot to us. So we will see how she feels later and maybe yet do a craft of take a walk, or if not, we will do both another day.  Thanks again for all your love and support.

Bye for now

MOM

Mucositis rampant!!

Today is Saturday and I didn't come to the hospital early today like I usually do.  I put in a little "retail therapy" first and it was great fun.  I found a few small craft kits that Dani can do here in the hospital and she seems interested, but she is pretty uncomfortable.  This stuff hurts!  She did get her PCA last night so she gets to push the button and get morphine.  It even makes a little electronic noise when she does.  Her tongue and mouth are covered with a white, milky colored coating that is apparently sores and she says her mouth feels swollen inside.  Ugh!  I asked if she wanted me to take a picture of her white tongue, but she declined. 

She doesn't have to swallow any more pills, they have put everything they can into IV form and liquids for the rest.  Still lots of medicine and more of the final chemo drug in four days, and then we will see how that goes.  Her blood counts are down and now we wait for them to start coming back up, but it will probably be another week before that happens.

Hope you enjoyed the pictures of the quilt, isn't it great!  We are both enjoying the cards.  Keep them coming.  I brought in a "smiley face" balloon today.  He has hair painted on the top of his head.  It is several different colors, lime green, blue, purple, pink, and gold in stripes one side to the other.  I did suggest that we could do that to Dani's hair and she seemed to like the idea.  More picture opportunities!  Dani had more platelets and red cells today.  They are taking good care of our girl.  This process is just taking a day at a time, no more news from UWMC.

Bye for now

MOM

Friday - Day 6

We are on day six since Dani's transplant, and guess what arrived today?  Yep, mucositis is here.  Her throat is sore and it hurts to swallow, I don't know just how badly, but she doen't want to take pills, and she says ice hurts too.  The doctors checked her throat and told her she will be getting what they call a PCA.  It's a button she can push for on-demand pain reliever.  She is looking forward to that.  Vic says it's a great invention.  Her just older sister says it makes you feel some better just to be able to push the button.  I hope so!


One really neat thing happened today.  The volunteers came in and brought quilts for the patients.  Dani chose one that is shades of greens and purples.  I am going to attach a picture of it today, now that I know how to do that. It was made by the Stone Soup Quilt ministries, a group of the Friends (Quakers) church.  It is lap quilt size and absolutely beautiful.  It's wonderful to know there are so many people out there who try to cheer others.

Speaking of that, more cards came today and I got one in the mail to take to her tomorrow.  Thanks so much for sending them.  They make her happy when she sees them on the wall at the foot of the bed.
We did puzzles from a book someone sent today, and she made an origami swan with the origami kit. She is very, very tired, but still doing her walks and her spirits are okay, but her body is pretty miserable.

I was able to donate blood today.  The Puget Sound Blood Bank was having a drive here at the hospital, and I went down and gave them a pint of my O Negative.  I figure if Dani is getting transfusions every day it's the least I can do. 

We are doing well here, beautiful weather, sunshine and mid 70's.  Are you all jealous?  Well, I'll go for now Bye for now

MOM