Update after forever

Well hello all. I know that it has been forever. Forever and forever. I apologize. Sincerely. I’m not quite sure of the exact reasoning behind the lack of blog updates, other than I really didn’t have the energy to do anything there for a while and I just got into the habit of NOT updating. But, lately, I have been out and about more and seeing more people and it has come to my attention that some of you may still want to know what is happening in my world. So, here I am writing an update. I don’t think that I will include everything that has happened since I have been back home, but I will do my best to be complete in what is happening now. J

                 So, I am living back in Boise in a cute little house in the Bench area. Just me, my pup and my cat. Yep, I’m the old lady that lives with her animals and has no social life. J No really. Anyway, I am back to my job at the accounting firm full time and loving it. I think I would be going crazy if I wasn’t back full time. I would have way too much time to do nothing and just think. Thinking is not how my time is best spent. J I love my job ever so much. I am currently studying to take the Certified Bookkeeping Exams which is quite enjoyable. I’m hoping to take the first part, at least, of the four-part test this fall. I am, for the next few weeks, running the sound board for the musical Xanadu, which is playing at Knock ‘em Dead Dinner Theatre. That has been SO fun! Difficult at times due to the fact that my body is not used to late nights, but well worth it. I was craving theatre so much and this is the least energy-sucking way for me to be involved and well, it’s Xanadu. Awesome! J You should all come see me and it. It’s really quiet hilarious.

                Now, on to the health side of things before my eyes fall out of my head. This past week I spent a day in Seattle visiting the doctor. I have been seeing my oncologist here in Boise once a week since I have been home, but since the doctors in Seattle were the ones that actually performed my transplant, they are the ones I go see when there are issues. So, backing up just a bit, the past few months I have been dealing with a lot of side effects of having a transplant. Namely GVHD (Graft Versus Host Disease). GVHD simply put, is my body fighting the new bone marrow that was transplanted in. Now, some GVHD is a good thing, it means that my body is reacting the way it should to a foreign entity, but a lot of GVHD is just a pain. Literally. So, a couple months back I started having a lot of symptoms of GVHD.  I will go into those symptoms in a minute. My doctors here tried everything they could think of to treat the problems, but after a while, it seemed that some things just weren’t getting any better. So, off to Seattle I went to discuss with those doctors what options of treatment they had. It was decided that I would start a drug trial that seemed to be having pretty good results in other people with GVHD. So, I started a new drug called Rapamune.  This past week was actually supposed to just be a follow up on how the drug trial was going, but it turned out to also be a second session on how to treat different aspects of GVHD.

                Ok, so now on to what I was/am dealing with. The things that instigated the first return visit to Seattle to get treatment suggestions were various and all of them super fun. J Let’s see…. there was the mouth. My mouth has just been a mess this whole process from the day of the transplant forward. I have had a range of fun in my mouth from simple tightness in the cheeks, swollen gums, hypersensitivity to spices, salt, hard food like chips, extreme dryness in the mouth, all the way to current issues such as sensitive teeth, open sores near the opening of my throat (that’s a fun one I tell ya), and supposed nerve damage in my throat that causes my throat to close rather than open when I’m trying to swallow. Ya know when the doctor tells you to say Ah, and your throat opens so they can see more? Well, mine closes. The theory at the moment is that while I was still in the hospital and dealing with a very severe case of mouth issues due to chemotherapy, that there was possibly some nerve damage done to my throat. So after months of swishing with a topical steroid mouthwash, using the new drug from Seattle, also a drug that was supposed to stimulate my salivary glands and eating a LOT of soup, my mouth is actually FEELING better on the inside cheeks, but that’s about it. I will be seeing an Ear Nose Throat doctor soon to have tests done on my throat and then we will go from there. Yay for fun.

                Next, there are my eyes. Though beautiful, of course, J my eyes are causing me nothing but grief. They decided a couple months back to stop creating tears. Not that I was wanting to cry or anything, but I would like to be able to read, stare a computer, etc. without pain. Alas, Much to my chagrin, they are still not creating tears after months of Restasis treatment, use of many an eye drop and  a visit to an Ophthalmologist. So, from the Ophthalmologist’s recommendation, in the next couple weeks I will be having Punctal Plugs put into my eyes in the hope that it will help retain the little liquid that my eyes do create and lessen the aggravation. Here’s hoping.

                What else, oh yah, my skin. All of sudden a couple months back, my whole upper body suddenly became SO sensitive, that if someone simply tapped me lightly on the shoulder, I would have cried. (Had my eyes been able to produce tears J ). It was SO bad at one point that simply sitting against the back of a chair or lying down in my bed was almost too much to bear. Thankfully, however, my doctor prescribed Lyrica and literally, since the day after I started that drug, I have only had a couple days with sensitive skin. We are still not sure what caused the Neuropathy, but hey, as long as it is under control for the time being, I’m good. J

                Well, there is a semi-recap, but I must end or I’m gonna get a migraine. I don’t mean to throw this information out there in order for sympathy or response. I really am doing all right. I am cancer-free, living on my own, working and thoroughly grateful for a wonderful life. I am happy and in comparison to a lot of other transplant patients, really doing quite well. Just a few hiccups along the road. I hope that this blog finds you all well and happy. I would love to hear from you all to know how you are doing and to catch up. Thank you all so much for your support and encouragement, this process would have been immensely more difficult without amazing people helping along the whole way. J

Dani

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.