So it has been a while, and not a lot has been going on.

I'm doing okay since the fall down the stairs. I still have some troubles with my hip and knee when i am walking too much, and every once in a while i'll do something that will tweek my shoulder or elbow. but overall i'm much better.

The summer is over, which means baseball is basically over. The Raptors made it to the Playoffs!!!! WOOHOOO!!! This is the first time since 2005. I'm so excited. I got a ticket so I'll be going to one more game. Just have to make sure i dress much more warmly than the last one i went to.

Dad is now in Arizona working. Mom is down there now looking for a house for us to move into once our house up here sells. It's been 3 weeks and no one has even come to look at it yet. I'm starting to get worried. I just want to be where it's warm and with my family.

Harvey is broken yet again, *sigh*. I can't get the battery to charge, and the computer won't run off the power supply for the same reason the battery won't charge. so yeah... don't know what's going on there, but can't do much about it right now.

I had an appointment with Dr. Dames a few weeks ago. She wants me to get all my usual tests done before I move. Want's to make sure that everything is fresh and new so i won't have to go thru all of it once i move. I still need to find a doctor. I guess i should start working on it. but i guess i'm kinda scared to do that. I've got great doctors now. I just want to move them down there with me. I know. not logical. but yeah. that's what i would like to do.

So yesterday I had an echo. I don't know the results yet, and probably won't for at least a week. went really fast this time. so yeah. i'm hoping things are okay there.

I guess i should go find where lilly has gone off to. I hope all is going well with you out there in blog land!

clumsy...

okay... so i was a little clumsy yesterday and pulled a "bella swan". I fell about 1/3 of the way down the stairs.

I was going to the laundry room to make sure that my quilt was washed and put it into the dryer. It was one of the last things i needed to do in my bedroom to have it finished for the realtor to take pictures today.

On my way down i tripped or fell or something. I don't know how it happened, but i missed the bottom 4 stairs. I landed in the doorway of the bathroom, screaming. the first person to me wasn't even a person. it was my dog. she was right there making sure i was okay. dad helped me sit up and I just sat on the floor for a while. I felt sick, dad said it was the adrenalin. eventually i got up, slowly made it up the stairs, and went to my bed. laid there for a while until mom was ready to take me to the hospital.

There was talk of sending for an ambulance, but yeah. so was not going to happen. I could walk on my own and move. i was just in a lot of pain. We got to the ER and had some x-rays taken, and given a pain pill, and then left. Nothing broken, just really bruised and swollen.

I spent most of the day/night just laying in my bed. lilly spent the day right with me. she's not happy that i'm hurt. and every time i moan or cry she's right there trying to make things better.

I was able to sleep last night, only because i drugged myself. I woke up today feeling very sore. I took a pain pill before i even got out of bed.

So here i am, laying on the couch, trying not to move, watching everything that has been building up on my DVR. The more i move the better i'm feeling, but it still hurts to get up and sit down again.

but yeah... that's my story for the day. Hope all is well with you!

news, news, and more news...

A lot has happened in the last 3 weeks since i wrote my last blog. wow. it's only been 3 weeks. seems sooo much longer than that.

Raptors games have been going on like normal. Lots of fun for dad and I. The season is in the second half already, meaning it's almost over. I sure am going to miss baseball when it's over. It's so much fun to go sit in the stands in our seats and talk with the people around us that we have known for years, just from going to the games. Dad mentioned once that he doesn't care who we're playing, or if we win or loose, it's just nice to go watch a good game. I would have to agree with him on that, however i do love it when our team wins.

I have my next doctors appointment next week. I had more blood tests last week, so we shall see if the cell cept is working, and what my levels are at and such. as long as my lungs don't get worse, and i feel better, i don't care how many pills i have to take. sure... i say that now. The next appointment we will be talking about maybe upping the dosage. and doing more blood work. Always, always blood involved. After all this time, i still can't watch them poke me. lol

I'm finally starting to feel good. I had a week there where i just didnt' want to get out of bed cause i just felt like crap and wanted to sleep, yet i couldn't sleep, and wasn't sleeping well at night, even with my sleeping meds. *shrugs* yeah tell me about it. but i'm feeling good now. I feel like i've got a little more energy, and that things are actually starting to be good again. Maybe the meds are actually working?

Um... I've hit the donut hole in my prescription drug coverage. If you don't know what this is, let me explain a little bit. I only get coverage on my meds for the first $2,500 that is spent on drugs. that's my cost and their costs. Then i have to pay for a while, don't know exactly how high, but it's at least a month or two, and then they will cover my drugs again. My meds cost $1,100 a month now. cell-cept alone costs $900 a month, and that is if we don't up the dosage again, if we do it will go up by another $450. I don't make that much money a month from social security. so yeah. I'm going to have no money for a while. So birthday gifts may be slow for a while. like they weren't slow enough as it was. *frowns* sorry guys.

And the last and final news... i think... at least for now...

Dad got a job in Glendale, Arizona. We are moving.

It's an exciting, yet scary thing. We will be closer to Jeremy, Jenn and the kids, yet further away from Emalee (need to convince her that she needs to move too) It's lower altitude, so maybe i can get off the oxygen. It's warmer. so no more freezing my ass off in the middle of the winter. I have to find new doctors, and hopefully one that will continue with our current course of treatment. When I see Dr. Dames next week i'm going to tell her, and i'm sure that she will find me someone and help me transfer all my stuff. but it's still scary. I finally found someone who wants to treat this stupid disease and not just tell me there is nothing they can do. I'm really going to miss her.

I'm also going to miss my friends and family here. Erin is heartbroken. She wants to come with us. The poor thing. Our home is her sanctuary, and we are taking that away from her. But, i have tons of friends and family in Arizona. And Glendale is only 30 miles away from Jenn and Jeremy and the kids. so we'll get to see a lot more of them, and get to see the kids grow up.

Dad has to report to work on the 2nd of September. Mom and I are going to stay here until the house sells. It goes on the market on the 18th, or at least that is the day the sign goes up in the yard. Dad is doing a lot of work to this place to get it ready to sell. He's been working so much around here that he's just totally exhausted by the end of the day. Wish there was more that i could do to help. But i'm kinda useless at the moment when it comes to much.

I think that's all the news for now. I hope all is well with all of you out there in blog land. My love to you all!

quick update...

Just a quick update on me and what's going on in my world.

Raptors games have started up again. Dad and I have had a great time going to the games and watching some pioneer league baseball.

I had some friends come and visit me during the 4th of July. We went to a Raptors game, a movie, shopping, yummy food, fireworks, movies, movies, and more movies... Oh, and talking. and being with each other. It was nice to have them here for the weekend. It was also an eye opening experience. I didn't realize how hard it was going to be to entertain people for the weekend. well not even entertain, just being with people. more energy than i have, without my naps. lol...

I have started on the new treatment plan. I started taking cell-cept 2 weeks ago. Yesterday I had some blood work done, and we doubled the dosage. I'm now taking 2000 mg a day. I've had some headaches, as a side effect, but i can deal with them if it means i'm getting better overall. I'll go in for more blood work in 2 weeks, and then i have an appointment with Dr. Dames on the 13th of Aug.

um.. i think that's all for now. If you've got any questions ask. Love you all, and I hope that all is going well with my friends and family out there!

Memories...

1. As a comment on my blog, leave one memory that you and I had together. It doesn't matter if you knew me a little or a lot, anything you remember!

2. Next, re-post these instructions on your blog and see how many people leave a memory about you. It's actually pretty funny to see the responses. If you leave a memory about me, I'll assume you're playing the game and I'll come to your blog and leave one about you.

long lost update...

Okay… so I’m such a noob. It’s been such a long time since my last post, and yeah. That’s so my fault.

We went to Oregon the end of may to visit with Grandma Kay and dad had to put a new roof on her house for her. We enjoyed a wonderful week. It was cool there, and misty a lot. But really relaxing and nice.

The great thing about it, I didn’t need to use my oxygen while I was there. I did get a headache, but then I would go take a nap with my oxygen and be fine the rest of the day. It was great. I could actually breath.

While there, 3 days into a 10 day trip… Harvey died. Yes, my computer died. I killed yet another hardrive. How I keep doing that I haven’t got a clue.

So, needless to say I did a lot of sudoku puzzles and “read” 4 books while I was there. We actually did end up leaving 2 days early so that dad had a few days to rest at home before needing to go back to work.

My 6th and final chemo treatment was the first of June. I’m happy about this. My poor arm was getting pretty abused and was not wanting to have any more blood drawn or iv’s put in.

The treatment went well. I listened to a book on my iPod since Harvey was in the shop. I had a really bad night after the treatment. And a few days after. I’m happy to have that over with.

I had an echo done this past week. Everything looks fine, however my levels keep getting higher and higher. I have one scheduled in another 4 months. Just like normal

Um… PFT’s have gone down again. Yeah I know… not a good thing. My oxygen was upped from 2 to 3. I’ve had a constant headache that we thought was a side effect of the cytoxan, until I went to Oregon and the headache was gone, until I got to Boise. The headache was back. So not nice… so, upped the oxygen, and guess what. The headache is gone. I also will have to use continuous flow on my small tanks when out and about instead of just the pulse.

I have an appointment on Monday with Dr. Dames to start the new treatment. We are going to start going with Cell-Cept, and immunosuppressant that is commonly used with kidney transplants. I’ll give you more info about that after I have it on Monday. All I know about it is there are less side effects, and no more being sick. There is still a high risk of infection… but since that hasn’t bothered me so far I’m not worried about that.

Hope all is going well with everyone. I hope you are all having a nice hot summer.

Love you all!

5th treatment, blessings given, water weight, sleeping, and aerobic workouts

Monday was my 5th treatment.

everything went just fine, and normal. I had the appointment at 9.30. For me this is early morning. This requires getting up at 8.30 at the latest. yeah... so not my idea of fun. especially when i didn't sleep so great the night before.

First bag of mesna went thru fine, then got the zolfran, and then the nice big bag of cytoxan. About half way thru i started feeling a little fuzzy. my head just didn't feel normal. not really dizzy, and i wasn't nauseous. just fuzzy.

The last of the bag went thru and then the second bag of mesna, and then some saline. so yeah. Lots of fluid. plus drinking a diet coke, apple juice, and a 1.5 liter bottle of water. I'm supposed to get pleanty of fluids the day before, the day of, and the day after treatment, and boy did i ever.

I told dr. dames about the trip to Oregon later this month, and she gave me her blessing and was excited that i was finally able to get out and do something. She just wants me to be careful and stay warm. That isn't a problem. She also told me that i deserve to take naps. That with the cytoxan, the lung disease, and scleroderma i'm going to be tired and that it was okay if I need to take a nap or two during the day. It's the way our bodies heal.

because of the fuzzyness i called mom to come and pick me up. I went home and just layed on the couch watching stuff on the television. I didn't feel well, just fuzzy, and then my body just hurt. and my skin felt weird. I weighed myself before going to bed. I had gained 10 lbs since i was weighed in at the doctors office that morning. and when i was weighed in there i was 5lbs over what i weighed the previous morning. to say the least... i was retaining water, badly.

Had a bad night. just didn't sleep very well monday night. woke up once to go to the bathroom and then tossed and turned and then woke up every hour on the hour. 8.00 came around and I was in the bathroom yet again, this time to be sick. went back to bed and woke up again about an hour later with a nice headache.

spent most of the day yesterday sleeping on the couch. Did venture out to get my car, but then ended up on the couch sleeping the afternoon away, with 2 children playing, a television on, and mom and Chelsea talking.

Went to bed... late again. but ended up sleeping for 11 hours. I LOVE being able to sleep like that. I feel so much better when i get out of bed. sure i sleep most of the day away, but woke up refreshed and even changed my sheets, made my bed (the aerobic workout), and emptied one of the 2 laundry baskets that were sitting in my room. Sure, now i have to put the clothes away that are folded nicely on my bed. but at least they aren't in a basket anymore and I feel like I have actually accomplished something today.

so all in all, not a bad few days. Have only been sick the one time, and am hoping that i'm not sick this month. but won't know that for sure until next week when it usually hits me.

Doctors Appointment...

Had a doctors appointment yesterday with my pulmonologist. I also had some breathing tests done. My appointment for the breathing tests were at 12.00 and my appointment with Dr. Ivester at 1.00.

A new guy did my breathing tests. I like my regular Kurt, but this new guy was nice. He kept commenting that I was to young to be having these issues and such. My tests were good. Everything stayed the same except my diffusion rate. It seems to have gone down some more. It could just be cause i feel a little congestion, or it could be that my lungs aren't doing as great as we thought they were...

I had some lunch in the cafeteria and then went to my appointment with Dr. Ivester. I LOVE the hospital cafe. Its got some way yummy food, and a GREAT salad bar. which i took part in. Then i spoke with Ivester. He's not too happy with my diffuse rate going down. He's going to chat with Dr. Dames about it and it looks like i may only be doing 2 more chemo treatments, and then evaluate to see if it is working. I am doing more PFT's in 2 months along with an echo. If my diffuse rate goes down more than he wants to start a different treatment right away. So we shall see. I did a 6 minute walk and he was really happy about that. He said that it's the best walk i've done so far. So that's really good. I feel stronger, and my lungs do feel like they are getting better, but the numbers just aren't there.

As i was getting the appointments set up he was on the phone with Dr. Dames. I LOVE that my two doctors talk to each other about what treatments they want to do and such. At least that's a good thing.


Hope all is going well with you!

Harvey, 4th treatment, dogs, and houses.

Harvey is home! WOOHOOO!!! for those who don't know what i'm talking about, i'm talking about my computer. Yes, my laptop has a name. a good friend called me a geek. i guess i am. *grins* I took it in last Thursday cause the casing was cracking. and after not even 6 months it was sick. So yeah.. it was still under warranty. so yeah. Harvey is home and fixed.

My 4th treatment was yesterday. Everything went well. My white blood count is where they want it to be i guess cause they didn't increase the dosage. Because Harvey was at the doctor in Salt Lake i had to go to thru treatment yesterday without it. Boy that was hard. But i had my iPod with 3 different television shows i hadn't seen yet on it, and books to read. I also took a great nap.

Dr. Dames wasn't there, so i got to see one of her colleagues, Dr. Solich. She was nice and seemed really interested in my treatment. I've been running a low grade fever for a few months now, but haven't been sick. So, we are going to run some extra blood tests when i do my cbc's on Tuesday. Also going to do some tests on my poop to see if there is any blood in it. kinda yuck, but yeah. you do what you got to do.

I think she really is going mad. I can't even leave the house to go with dad to home depot for half an hour. Yesterday she wouldn't even eat. She thought starving herself was a good thing? yeah... my puppy is just insane. poor girl.

The kids were over again this weekend, along with tonight. I love seeing them. I love being with them. They make me so happy. I'm going to be sad when they leave us in a few weeks. but it's time for them to go home where there daddy is. The house is almost done. I can't wait to see it. The pictures are the coolest!

Mom and dad are leaving me this weekend. They are going to Las Vegas for the weekend to visit with Aunt Barbara and Uncle Ira. This is the first time i've been left alone since they took the grandparents to Seattle last June. We shall see how this weekend goes.

Hm... i think that's all for now. Hope all is well with you all in happy land!

It's been a little while...

It's been a while since i posted, do i thought that i'd post some neat pictures of the kids...


our little baby girl turned 4 this past February. I can't believe how big she's getting. She's lost most of her "baby" fat and is starting to look like such a little girl.


A beautiful picture of Sister Suzie whlie sledding last month with their dad when he came to town. I wasn't there for the picture so i don't know if it was before or after the actual sledding, but it is just so precious. She's LOVING school and recently told me that her new best friend's name is Eric and she loves his eyes and his face. she'll be 6 in May.


The Boy catching some air while playing in our front yard this past February. Can you believe the 9 foot snow hill we had... He's now lost 6 teeth and talks with a lisp since loosing his two front teeth. He's adorable when he talks and does it sometimes just so he can make us laugh. So adorable!

Hope you enjoyed!

Treadmills and muddy paws...

First week after treatment...

I feel good. Had a bad morning yesterday, didn't want to get out of bed, so nice and warm. But waking up to snow isn't a good thing when your so looking forward to spring. It has been a long winter. maybe because we've had so much snow this year.

I did 3 days on the treadmill this past week. I am so proud of myself. i've taken the last two days off, but plan on going back on tomorrow. This is the first time i've actually felt like doing something. I've had so much energy. I recommend a mutli-vitamin to everyone. I swear it's one of the reason's i'm feeling so good.

Mom and dad bought a new couch for the family room. Very similar to the one posted, however it is black. It's being delivered tomorrow. So exciting getting new furniture. I'm hoping to go bed shopping this next month. I'm not sure if i can quite afford it yet, but i'm wanting a new bed. I've never had a bed frame of my own as a grown-up. I know which one i want at Ikea, just have to decide if i have the monies or not.

Because of the rain we have been receiving, lills has been coming in with muddy paws, and then climbing back into my bed with me. Yeah... did it again this morning. I have to change my sheets yet again because of her... *sigh* spoilt dog.

I hope all is going well with all of yous! I love your comments and am very thankful for the support of my friends and family out there!

Love you all!!!

Treatment number 3

Yesterday was my third cytoxan treatment.

I woke up a little late, but that's okay. i still had plenty of time to do my hair and put some make-up on and such. the appointment was at 10.30, the iv was started at 11.15. It was started so late cause i didn't have a chair when i got there, well not a chair that they wanted me to sit in long term, so i had to wait for someone to finish and then got to move.

The iv went well. They upped the chemo again. My white blood cells aren't dropping like they want it to. My count is still in the normal range, low side of normal, but normal.

i slept crappy the night before, so i ended up taking a long nap while there. I was basically the only one there during that time so they shut the lights off for me. Was kinda nice.

Because i seemed to tolerate the cytoxan while i'm there they can flush it thru faster. so I was out of there by 4.15. Was nice to be out so fast this month. It gets kinda boring there, even if you have all sorts of things to keep you entertained.

Got home and had a nice evening with the parents... until about 7.00 when i started feeling sick... I took my pills and went to bed early, 8.00, ended up being sick all night. It was a bad night. I'm still not feeling great today, but have a doctors appointment in an hour.

My left wrist has been bothering me. it's just a little arthritis pain that i've never had before that doesn't seem to go away with the drugs i have... so today we are doing a cortizone (sp) in my wrist. will probably hurt... but if it works in the long run I'm fine wth it.

um... i think that's all for now. not really anything else going on in my life right now. Hope all is well with you guys!

yeah.... i'm back...

God... i've been away for a long time. I have got to get out of this poor me attitude i have going on right now, and have had going on for a while, and just get back with the land of the living.



I was looking at this picture of me and thinking how happy i look. and how great this night was. and it dawned on me. I've done this to myself. I've locked myself up in this house and haven't been out and about, haven't contacted my friends, in fact have ignored most of them. and for this i am remiss.

This picture was taken this past Thursday night (so this is a new colour). I went to see Alanis and Matchbox Twenty in concert. This picture was taken during one of the songs... I think it was while Alanis was on stage. It was utter joy. I had the best time with my brother in law and sister.



It was utterly brilliant. First when Alanis started singing, before she was even on stage, i got chills. It was just the coolest thing in the world. and then when Matchbox was on stage... i haven't had that much energy in months. i hadn't felt that good in ages... yes i was dead on my feet afterwards, and was just tired yesterday, but today i felt great. I wasn't expecting to feel this good after a night like that.



Now i'm not going to go out and do this every night and over do it... This just showed me how much I am missing. How much i have just ignored the past 6 months. and for that I'm sorry. I'm sorry to my friends who's lives have changed drastically and I haven't been there for them, even when they have always been there for me. I am truly sorry.

But i'm back. I'm going to make an honest effort to become a member of society again, and make an honest effort in keeping up with my friends.

I hope that you are all well!!!

hello from chemo land...

It has been months since i've updated, and i'm coming up on my third treatment of Cytoxan.



If you can believe it, i feel like it may actually be working. I am able to take deep breaths, and it doesn't hurt anymore. I do feel that my white blood count hasn't gone down much so I think the dosage is going to go up again. But I can handle it. I think that this is actually going to be a good thing.

I've become addicted to tea. I am so in love with these teas that my friend Joe sent me from England. They are sooo good. Dad says that it's just potpourri... well it does look and smell like some yummy potpourri, but it's tea, i promise. Even dad's come to like it. *grins*

Hm... tonight is the matchbox twenty concert. I'm a little apprehensive about it all. I haven't done anything this big since i started getting sick again. I'm just hoping that everything stays okay. I'm feeling good today, and seem to have no problems.

love to all!

treatment, cytoxan, doing nothing at all...

i've decided that I'm going to use this place as somewhere for me to vent and such. I don't know. I just need a place where i can talk and ramble and no one cares what i am saying or doing or such.

i went to doctor dames today. we have decided to go the cytoxen route for treatment. this will be the once a month iv treatments for 5 hours. this is the same treatment that they are doing in the trial. so that's one good thing about it. secondly, i won't have to take more pills, that's a yeah. and it's a treatment plan. we have decided on something and we are doing it. finally.. i was so hoping to have something started by christmas, but this is good... i hope it is at least.

we are going to do the cytoxen for 6 months. then evaluate, and then either continue 6 months at that time, or start cellcept. *shrugs* i don't know anymore. I wish someone would just say. this is the best thing for you. do it.

i feel so empty lately. i guess it's the christmas season. i've got to finish the projects i have to get done for next week... but i just don't want to do anything. I just want to sleep and watch tv, and play on my computer, and just don't do anything... but i guess i can't do that. I have to be an active member of society.

just what i need right?

another blog... *shrugs* I don't know what i'll use this place for. But i felt the need to just have it. Don't know why...