Tuesday, June 03, 2008

SCC

One of my favorite songs is "All I Want for Christmas". It is by a popular Christian musician, Steven Curtis Chapmann. I really enjoy some of his music and that song in particular is so wonderful. It is about children with no families or homes, he sings, "all I really want for Christmas is someone to tuck me in, a shoulder to cry on when I lose, a shoulder to ride on when I win...........all I really want for Christmas, is a family". The first time I heard it, I saw the video too. He shows pictures of Foster Children who are looking for homes. It is such a beautiful song. He also has a few others that just move me deeply. I first got interested in his music because I found out he has a ministry and trys to help people who adopt from China. He and his wife had adopted 3 beautiful girls from China and they truly want to help others, so I started reading his blogs etc while we were waiting for our court date for Rosie.

Anyway, on May 22, they lost their youngest (adopted from China) daughter in a driveway accident. She was 5 years old. I found out about it the next day and they have been on my mind and in my prayers. Please, if you are so inclined, check out their blog and remember them in your prayers:

http://chapmanchannel.typepad.com/inmemoryofmaria/?roi=farm-12766586-88803-14a570b25b795856f5a4b7c2b8067d5a&

My Health

Well, it has been a pretty crudy month for me, health wise. I was on session 6 (out of 10) on my radiation when I started to get pretty ill. They gave me some medicine to help with the nausea, but I kept getting worse. I was unable to eat or drink and by session 8, I was vomitting profusely and was getting very weak. I had session 9 on a Thursday and was up all that night vomitting and on Friday I called and cancelled for my last session, I was too weak to even get out of bed. On Saturday, wouldn't you know it, my mom had to leave for a week for a conference.

By Saturday afternoon, Robert was so scared he insisted we go to the E.R., which we did. They admitted me and just started filling me full of fluids. My Blood Counts were so low, they were surprised I was still alive. In fact, they didn't believe it and drew my blood again to double check it!! I can only say that your prayers kept me alive through this terrible time.

They kept me for about 4 days, my mom came home early from her conference (sorry mom, but thank you) and I tried so hard to eat and drink, but I just couldn't. Anything I tried to get down just came back up again. It was only a couple days before I ended up back in the E.R. again - this time for almost a week. It was really awful. I hope I never feel that sick again and I hope no one else ever has to go through that.

I just started to feel better this week - after I'd been home from the hospital about 2 weeks. I do feel much better now though and I thank everyone for their thoughts and prayers for me. A huge thank you to the sisters who brought food to my family the first time I was in the hospital when my mom was gone. Also, I'm sorry if I haven't emailed you in a long time. When I finally could get back on the computer again I had over 900 emails. Most of it was junk, but still, it took me forever to sort through it all.

Please don't ever take your health for granted. Give thanks each day that you wake up and feel good. Use your body - work hard, play lots, serve your family, friends and strangers. Oh, how I wish I could!!

Miracle Part 2

We recently received another check from the Holly Walk-a-Thon. Apparently, they hadn't collected all the donations when they sent the first check. So, they just sent me the final check for another 900+ dollars. It is unbelievable!! Over $4,000 in all. This money came at such an opportune time for us too, how can we express how much we needed it and appreciate it. We were able to put some of the money toward bills, but we also used some to buy supplements for me that I really believe are helping me with the cancer and also to overcome some of the bad side effects of the chemo. We put a little aside to take a quick trip this summer.

Basically, we have all the frequent flyer miles that we had been saving up to go get Anastasia from Russia. So, we have enough for all of us to fly out West this summer. It is really important to me, because we still have family who haven't met Rosie yet. In addition, both Robert and I have relatives who are elderly and between my health situation and theirs we figured we should get there this summer. But, we didn't have enough money for eating and a rental car, so now we will be able to do it. How wonderful.

Finally, we used some of the money to buy a small, above ground pool. This is going to be wonderful for the children this summer and they are so excited about it. However, that isn't the main reason we purchased it. The physical therapist told me that my best exercise opportunity would be in the swimming pool, but it just seemed so hard, logistically, for me to go to the pool. I can't get dressed by myself and I'd have to keep an eye on Rosie and the boys - how would I be able to exercise etc. I just felt like I'd be overwhelmed and exhausted by the time I even got changed into my swimsuit, so, I never went. Robert came up with the idea of putting a little pool in our backyard. We aren't sure yet how I'm going to get in and out of it, but I'm sure we'll figure out something. My dad and stepmom flew out for a quick visit and my dad helped Robert and the boys get the backyard leveled out and ready for the pool. Robert just set the pool up a couple of days ago. Right now, it is about as cold as the arctic ocean but as soon as it warms up, I'll be in there every day, not only exercising but hopefully getting to do something fun with my children.

How grateful we are for the money and all the opportunities it gave us. Amazing that you could change my whole families lives with 2 checks - but you have. Thank you to everyone who participated in the Walk-a-Thon. What marvelous people you are.

Saturday, April 19, 2008

My miracle

I have posted here previously about the amazing friends I have and I know I've posted often about my friends in Vienna - we only lived there a short 3 years, but what a life changing experience it was for me. I made friends who were to become my sisters - women whom I am sure I've known from a previous time. Have you ever felt like that when you met someone - like you've always known them. That was my experience in Vienna and not just once or twice but many times with many people, there are a few though, who know my heart and soul and whose love and prayers I have felt uplifting me when I couldn't make it any farther. My dear friend Stephanie organized a Holly walk-a-thon to raise money for me recently and I just got the check a couple of weeks ago. I'm not sure if she did it mostly on her own or if others were involved, I know that another dear friend, Ronde', surely helped. But, Stephanie, was able to collect money from people who don't even know me - I'm not sure how they did it but they raised $3,250 to help us with medical expenses etc. This money arrived at a time when it was truly needed and I have to give my thanks publicly to all who participated. She sent me the list of names of the people who donated to my cause and I am just rendered speechless by the length of the list.

It looks like the husbands of some of my friends even took my cause to work with them and were able to find donors who have never even heard of me. They went to church and I saw the list of names and I know that many of those people struggle to put food on the table for their children, yet somehow they were able to come up with donations for me. I even saw names from the school where my children previously attended - Max's first grade teacher, Daniel's second grade teacher, Alexander's music teacher, parents of my children's friends. Friends of friends and parents of friends who don't know me, but who felt inspired to help. How can I thank each and every one of you? It means so much to me and this money feels sacred and holy and we are so grateful for your love and your sacrifice.

As for the people who did the actual walk, here are a couple of pictures. I didn't want to post anything that really shows faces because I don't have permission, but these are the dearest people. They walked all the way from the house I used to live in to the church we all attended, the love and thought that went even into that small detail, warms my heart. It was a long walk and after that they had to all go and collect the money - much of it from overseas too. I just can't imagine how all this was organized and executed but I am full of love and gratitude because of it.

Thank you to each and every one of you who particpated in this event. I have the list of names (many of whom I don't know) and I look at it all the time - you are in my heart - you are my miracle and I pray that you will be blessed for your sacrifice and kindness.

I am feeling pretty good right now and just got the results back from a brain MRI -- it is negative and that has been great news for us. I am going to start radiation therapy on April 21 - just 10 sessions. They found a fracture in my spine and a big tumor pressing on it. The radiation is going to be to try and shrink a couple of the larger tumors that are causing me pain in my lower back and hips/legs. I pray this will help and that I will be able to walk/get around better afterwards.

Thank you to everyone who prays for me and thinks about me. You give me strength and uplift me and my family and we love you so much for that!





Some of my dear, dear friends relaxing after a long walk.
Here they are walking along the Danube - thankfully they got a good day. Stephanie said it had been raining up till then, but they got beautiful weather for the walk.

Wednesday, March 19, 2008

My 5 o'clock shadow...

Well, we got some of the test results back. Most things look 'stable', but they did find a fracture in my lower spine and a rather large tumor next to it. The tumor may or may not be pushing on the fractured site causing pain. But mostly they have decided that it is the chemo that is causing my elephant leg problem. So, back onto the chemo; once again modified. We are keeping our prayers flowing, hoping that this too shall pass.

Robert got to go to the Temple tonight; I'm a bit envious, but oh so happy he got to go. My mom has been taking Wednesdays off so she can stay home with the boys while we go to Chemo. Rosie comes with us and keeps all the nurses entertained. She is always lively and amusing. It is so sweet, she always cuddles up to me while the nurses poke and prode and she rubs my arm and says, "aw...mama ow ow", "aw". Over and over again - she can be so empathetic.

About the title...I am so thrilled, this newest chemo I was on allowed me to grow a little 5 o'clock shadow on my head. It is about as long as Robert's is at the end of the day, but still, it is a little color on my scalp instead of a shiny, white, glowing light bulb! We'll see if it contines to grow or if it will all fall out now. I also got back 1/2 of my eyebrows. They grew from the corner of my eyes to about 1/2 way so the outer part didn't grow back in...oh well, some hair is way better than none!

Thursday, March 06, 2008

Another month has gone by

It has been a hard month for me. I have been having bad reactions to the chemo and have been in a lot of pain. I have awful elephant legs - seriously I gained 22 lbs in 10 days and its all in my legs and feet. They range in color from a light blue to a deep almost purple-black. I'm unable to move about too well and feel pretty yucky. This is not to complain but just to let everyone know what's going on.

On the brighter side.....

My good husband has decided to heed my pleadings and buy me all the stuff I need to start a little business. I have had such a hard time figuring out what I can do. I know I have talent - God has told us that we each have our talent, but it remains elusive to me. So, I have friends with true talent and I watch them and try to figure out how I could do the things they do, and make it into a business where I could make some money...

Then, in November, we had a Super Saturday at church. It is a day of crafts and fun and I usually don't go, cuz, well, I'm craft challenged too. But, I went because I just need to start getting to know the sisters at church and I really needed a day pretending I was just a normal girl having fun. Well, I had a blast. I made some signs which are vinyl lettering on wood planks. Simple. But, it was fun and they look great too. I loved it and immediately decided I could do that as a business.

I've been doing research, trying to see if there is a market, and honestly, I can't figure it out, but we got a great deal on ebay on the machine that does the cutting of the vinyl - yes, more credit card debt, but, this time I should (hope, pray, hope, pray, pray) be able to pay it off. So, we are off and running. Not too fast though...I'm still working on figuring out the software program for the machine - it is complex, but I will do it!! I am thinking that in the next couple of weeks I should have a website on ebay and maybe on deseretauctions.com---whoo hoo.

Right now, I'm working on getting my body to co-operate with all of my grandplans. It's hard when your body won't keep up with your brain. Anyway, I've got lots of MRIs, CTs and other such stuff scheduled for this month to try to figure out why I'm swollen up like a giant eggplant. A Giant, Bald Eggplant. I will post news as I get it.

Sunday, February 03, 2008

The Game

We did it. We went to the game and the Jazz won. Yippee. It was a bit hard on me and I have elephant legs today (they really do swell up), but it was lots of fun. Sometimes, you gotta have fun!

Friday, February 01, 2008

Test Updates for January 08

We got the test results back and things are looking pretty good. None of the tumors are measuring any larger and the tumors in the liver, stomach, lungs and in the lymph nodes next to my pancrease are either the same size or a tiny bit smaller so that is good. For some reason it is hard for them to measure the tumors in the bones but they seem to be the same size which is good.

The bad news is that my hands and feet are getting worse and worse numbness and cold. Typing is quite difficult as I can't feel and the steriods they give me which are anti-nauseantes blur my vision so I can't see well either. Sigh. Don't mean to complain, but the doctors decided that the numbness is actually quite serious and could lead to a permanent crippled condition and that I needed to get off that chemo right away. It is very unfortunate too because that was the best stuff and the newest too. Avastin and Taxil/Paclitaxil. That was the way to go and I might get back on it again after a while of letting the side effects go. Now I'm on another one called Gemzar (which I believe was also one of the bad guys on Star Trek - wasn't it). Anyway they chose this one because it should aleve the numbness after a few weeks and it can also be used with the miraculous Avastin which I was on before so that is something to look forward to.

Anyway, my vision seems to be getting better though the numbness isn't clearing up yet, but we were told to expect a 3 week or so wait for that. The worst side effects so far with this new stuff is neausea which we have just got new tablets for and also terrible swelling in my legs. It is so bad I can hardly move right now and have to keep my feet elevated often throughout the day. My legs swell terribly - even so one leg looks like two and I have no ankle and my feet look like a cave person's purple swollen stumps. Yuk. I do not, in the least, exaggerate. Anyway, that is the situation as of now and tonight is the big night. I got Robert tickets to the Wizards/Jazz game tonight. It is something we've always wanted to do but just never could afford, so in my insane credit card/Christmas spree, I decided to go ahead and make a few dreams come true. I hope I'm up to it and can really enjoy it without complaining. It cost a fortune, but I wanted to do it before I deteriorate anymore!

Seriously, I'm feeling much better than last week and have good hope for next week. The good thing about this new chemo is that I'll be 2 weeks on and one week off. That is a good thing, to have that break, but I don't know how it is going to work out with my mom having to take a week off every two weeks to watch the boys. Ah, well, it will all work out somehow.

Hope everyone reading this is in good health and enjoying their lives to the fullest. Don't let a day go by...don't miss a kiss or a hug..and don't pass by a smile! Sorry for all the typos!

PETS - Do you let your dog.....

Sit on the furniture? Sometimes I regret having established this bad habit with my dogs, I get hairy and my company gets hairy too. But, how I love it when Shasta cuddles up with me on the sofa or lies down next to Rosie when she is napping on the couch. Oh well. I know lots of dog people who show up at church wearing dark colors and you would never suspect they have dogs - I don't know how they do it because I've seen their critters on the couch too. Anyway, doesn't Shasta look comfy here? She actually color coordinates quite well too!

Tuesday, January 29, 2008

Saturday, January 12, 2008

A Working Woman?? Hah!

Well, it is true. I am looking for a job I can do from home. Some kind of internet job, I know there has to be something out there and I've been researching it the last few days. I just need to work a few hours a day on the computer. If anyone knows of anything please let me know. It seems like there are lots of opportunities out there, but how to distinguish between the legitimate ones and the scams? They all seem like scams to me and we can't afford to send each of these people $50 or $100 to each of these places to find out if they are legit.

So, anyone knows of anything that is legit, please let me know.

My Health

I have been doing pretty well. The problem now is that I need to rebuild the muscle in my legs and back. Lying flat on my back for 2 1/2 months just caused everything to atrophy - disgusting! I just got some more tests done; a bone scan and a CT and I'll have the results the end of the month so I will know more then.

A lot of people keep asking me when I'll be done with the Chemo and the answer is: Never. That is what is going to keep the cancer from eating up all my bones and organs, well, it won't stop it but it will slow it down. The stuff they have me on now is probably the strongest and certainly the newest stuff. I will stay on this until the tests show that the cancer is moving quickly again and then they will try me on some other type of chemo and that will be the game, switching chemo therapies trying to stay ahead of the cancer. My last tests did show the tumors in my liver are smaller - that is such miraculous news and not really expected. As I said, the hope is just to slow it down, stop it from getting much bigger very fast.

We have total faith in the Lord. Our struggle, as always, is trying to live the commandments, keeping the spirit with us all the time, and being the best people we can be. From time to time we get a big wake-up call that tells us we need to get back on track and that is where we are now. We know the Lord can't give us the blessings he intends for us unless we are doing what we are supposed to be doing too. We are grateful for all the prayers from all of you who love us. You have prayed life into me and kept my family going and we love you all so much.

Friday, January 11, 2008

Rosie Reads.....

Rosie loves reading letters! She can pick out about 1/2 of them. Her pronunciation isn't too perfect, but she has so much fun. She calls "r" roe-roe which is her name for herself and since r starts roe roe well that is a better name than "r". She is trying hard to pronounce her own name properly now too. It sounds kind of like ro-he, but still she usually says, roe-roe.

Today I put on a t-shirt with a lot of writing on it and she got so excited and started pointing out all the letters she knows. Her favorites are the vowels and she knows all of them. She has been making lots of two word sentences but yesterday she said, "More rice, momma". Three words! yea. I just can't wait to communicate better with her.

I have the cutest video of her "reading" but I can't get them to load. I'll try again tomorrow.

Sliding down the stairs..

This is great fun. Rosie usually finds entertainment on her own.

Christmas Day, later in the day...

Okay, I'm posting pictures backwards, sorry about that. This is Stewart and Scott playing with, I mean setting up this very cool music/marble run thing they got Sade. They wouldn't let Sade touch it (just kidding), but it was really neat. They attached an ipod to it and the balls and lights would coordinate with the music. They tried setting it up a few different ways - cool. I can't find a good picture of Stewart, but I'll keep looking. He is an amazing man too. He is in the AF and he also serves in the Bishopric at his ward, but really what I think he is so good at it being a father - his kids just light up whenever he talks to them or plays with them. I was able to see him discipline his boys a couple of times and he is just so evenhanded and calm with them. He and Erin complement each other so well and it was just a pleasure to watch them - they are a good example for Scott too -- HINT, HINT Scott-- I mean, no rush, but you'd be a great daddy and husband too!!

Here is a beautiful shot of Erin and Drew. She started to fade a few hours later and she and the baby took a short rest on the couch.
Scott and Stewart still hard at work.
This is the little inch worm Rosie got for Christmas. She loves cruising around on it.
Ethan and Sad playing one of games they got.