Clinical Trail

Simon in motion w/Timber in the back.

Simon in motion w/Timber in the back.

Happy Tuesday Readers!

It is a happy day isn’t. That is what I woke up telling myself at 5:15am today. Not sure why I was up so early today. Could it be nerves? All the rest I have been getting lately? The 16 pound cat laying on my face? Who knows but I was up. I decided instead of just lying there, that I would get up and get moving. Coffee was made, pets were fed and pills were taken.

Clinical Trail

I found out what drugs I would be taking for the clinical trail yesterday. Candy, the head clinical trail nurse called me at 5pm last night and told me that I would be getting the “control” drugs, not the trail drug they are testing. To be honest, I was pretty upset. I had built this drug up in my mind and had decided I had to get it. There were tears. Buy like he usually does, My Man talked me down. This is the control drug. One they know works. On they are testing an unproven drug against to see if it works as well as. Looking at it that way made me feel better. Candy telling me that I would be getting the same level of care helped as did my parents telling me their friend who is a doctor saying it was the best sarcoma drug out there did too. There are a lot of emotions swirling around my head and heart at the moment Readers. I do feel for My Man and The Boy who have to put up with living with me!

On a Lighter note, this is what my hair looks like when I wake up.

On a Lighter note, this is what my hair looks like when I wake up.

So what is the cocktail I will be getting? Yes, I said cocktail. I don’t get just one drug, I get two! Taxotere (Docetaxel) and Gemzar (Gemcitabine). Say that five times fast….say that once, I dare you. Here is how it will play out. Today I will go in, have a EKG, get blood drawn and have one dose of Gemzar given to me. I will then go back next Tuesday and be given Gemzar and Taxotere. Week three I stay home and hopefully don’t puke my guts out. Then we begin again! There will be blood drawn, tests given and appointments in between but that is the gist of the thing. Not so bad right? The side effects are the common ones associated with chemo, flu-like symptoms, fever, fatigue, nausea, vomiting, skin rash poor appetite, low blood counts, mouth sores, hair loss, fluid retention, etc. Sounds fun huh? My partner in chemo crime, Rebecca, will be coming with me today. We are going to compare the Winship Cancer Institute and Georgia Cancer Center and how things are done in their infusion centers. Should be interesting. Next week My Man is going to go with me.

New scarf

New scarf

I ordered three new scarves a few weeks ago and they came in the mail yesterday. Love them! I will post the other two soon but I choose to wear this one today.

Have a great Tuesday Readers. I plan too.

 

First Day of 4th Grade…

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Bus stop crew

Readers! Guess where I am? I am at home. On my Mac. AT HOME! We have internet Readers! Woot! Woot! I am so excited! It is fast too. I can believe how long we lived with crappy internet. The things you will get use to and deal with. Crazy! Today was also the first day of school for The Boy.

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The Boy and My Man

My alarm was set for 5:50am so I could be showered and dressed before I woke The Boy up. He decided that he wanted to take the bus to school this morning so we had to be up and ready earlier then normal. The bus got there on time but this afternoon it was about 10 minutes late dropping him off. I guess that isn’t too bad for the first day.

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My 4th Grader

The said he liked his class and that the teacher was pretty nice. He is just thrilled that the wifi is up and working! Back to watching You Tube videos and face timing with his best buddy. No homework today either. That sounds good to me.

Some Cool Things…

Sparty jello shots

Sparty jello shots

Panny in a bucket

Panny in a bucket

Getting The Majestic fresh

Getting The Majestic fresh

Grandpa visit

Grandpa visit

New "Brush" for Timber

New “Brush” for Timber

Tomorrow is chemo day for me tomorrow. Hope it all goes well. If I am up for it, I will write a short blog to let you all know how it goes! Have a good evening!

Monday, Monday!!

Readers! How are you doing? I am at home right now writing this post on Word again. I will be going into the office on Monday and will upload it to the blog from there. The last few days have been busy ones. My parents have been in town and were able to meet and discuss the clinical trail with Dr. D. My dad had a lot of questions and I think both he and my mom left the office feeling much better. I had blood drawn, gave a urine sample and had an EKG done before my mom and I left.

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I did find out that I am the first patient of Dr. D’s that was found for the trail. The trail is world-wide but very small due to the difficulty of find people like me. You know, one who kicks ass! Ha, just kidding. There are a lot of certain criteria that one has to fit and I guess I am the best one they have found so far. On Thursday, I went back for an Echo Gram to check out my how my heart is doing. I had this done about 2 months ago before I started the last chemo I was on. It is very normal for the to be done before each round of chemo. I will also have another CT scan performed. The one last week was only for the chest and for the trail they need to one of the chest, pelvic and abdominal areas. I had to drink contrast (which was mocha flavored and disgusting in the morning) and have been fasting since midnight last night. I am allowed to have little sips of water but no coffee. That is what is hurting the most. I am sure around 10:30 I will hit and invisible wall and want to pass out!

At my appointment on Tuesday we discussed my pain levels. I am feeling much better then I have been for the past few weeks. Right now I am taking 3 10mg of Oxycotin in the morning and evening and 1 5mg of Oxycodone about 2 to 4 times a day depending on my pain. I had been around an 8 throughout the day and now I have dropped to as low as a 3 sometimes! It is like a different world! Gold star for Dr. D!

The Boy, Best Friend and The Mom

The Boy, Best Friend and The Mom

The Boy has been having and exciting week thanks to my friend Jennifer (mom of best friend of The Boy) and my dad. On Tuesday night they went down to Centennial park and rode the huge Ferris Wheel they have there. They also played in the Olympic Water Rings.

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The Boy spent the night and then on Wednesday Jennifer, my Dad, The Boy, The Friend and The Sister all went canoeing on the Chattahoochee River. There were stops to islands, mud fights, water fights and ice cream involved. Good Times! Apparently The Boy packed for two nights so he spent the nights so he spent the night again. Trying to have as much fun as possible before school starts of Monday!

Another Proud Chicken Mama Moment

Zazzles & Terry Pete roosting!

Zazzles & Terry Pete roosting!

Poppey & Turbo not roosting.

Poppy & Turbo not roosting.

Not only are Zazzles and Terrance Peterson roosting, we have a new member of the family! My FIL, Bob, came down to visit us since it has been awhile since we have all seen each other. He had yet to meet The Girls, Timber or Panny. He is a reader of the blog and thought The Majestic need a rooster to watch out for the girls. Introducing Felix!

Keeping watch

Keeping watch

New home

New home

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Felix

Felix

I am at work getting ready to post this. I have a lot more to write but it did not save on my zip drive. Hopefully by the time I get home today the internet will be working and I can start posting regularly from home. Keep your fingers crossed!!

Updates! Updates! Updates!

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Panny hiding from the vet in her carrier.

 

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Nail trim

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Patchwork Panny!

Patchwork Panny!

 

August 3, 2014

Readers, I writing this post (at home on Word) in hopes I can post it while at work tomorrow since our internet at Hotel Yorba is still not working (using a flash drive). I wont get all into all the details but hopefully by the 11th of August our internet will be up and running again. There are a lot of things going on here and I feel lost not being able to blog about them and share it all with you. There are also picture I want to post, so those will be randomly posted too! I have decided to write a brief explanation and hopefully I will be able to share it with you all soon.

Zazzles and Terrance Peterson

I am proud to announce that Zazzles and Terry Pete have laid their fist eggs! Woot Woot! How awesome is that? The eggs are small and light brown. I am guessing has they grow their eggs will grow along with them. I am so proud of my girls. It was The Boy who went up to the Majestic for a visit while I was out doing errands today. He didn’t see Zazzles in the run so he opened the door to the nesting boxes and there she was! Just chilling out doing her thing. Once I got home he told me about what he saw and then ran back up to the coop and came down with three eggs. One was Turbo’s and then there were two tiny ones. Very excited for my young hens. Proud Chicken Mama!

The Elephant in the Room

Had to move to the special toothbrush and toothpaste.

Had to move to the special toothbrush and toothpaste.

For those of you who follow me on Facebook, you know that my doctor’s appointment on the 31st did not go as we hoped it would. Long story short, the chemo I was on wasn’t working. My pain in/on my ribs was getting worse and I had been in a pretty shitty mood for the last two weeks. When we left that hospital I was scheduled to check into the hospital on the 4th of August to start the chemo I did last summer. You remember, I was in the hospital for 5 days, lost my hair and was a mess. Dr. Read did suggest I try to get a second opinion but in the meantime try the big guns chemo but even though it had worked in the past, there was no guarantee it would work again. My Man and I were very bummed out. I went home and went to bed depressed.

My sarcoma girls reached out to me and all suggested I meet with a Doctor who use to be at Emory Winship center but who moved to Duke Hospital (to do sarcoma research) and then moved to Northside’s Cancer Hospital here in the ATL. She is very well-known in the Sarcoma world (around the world) and basically saved one of the sarcoma woman’s life after all the other doctors gave up on her. The ladies really wanted me to meet with her. Since she was in the ATL, I figured I would try to meet with her before I try to go to NYC.

Fast forward to Friday around 11am. I wrote Dr. Read that I would like to meet with this new doctor, we will call her Dr. D., for a seconded opinion. Within 30 minutes I talked to Dr. Read on the phone and he told me Dr. D wanted to meet with me that day. She is working on phase 3 of a clinical chemo drug for sarcomas and thought I would be perfect for the trial. The Boy and me met with her (had to cancel my nail appointment :)) and I really liked her and what she had to say about the trail and Phase 1 and 2.

So this is how things stand now. On Tuesday I will go in and give my written consent to participate in the trail. I will have a few tests done and then will be put in the system to see if I am randomly picked for the trail drug. If I am (she will be told) I will go the infusion center (sometime after the 11th of August) and have it given to me. It is out-patient deal. I will go in after a week or so to have blood work done and then after three weeks go back in for another infusion.  Phase 3 of a drug trail means they have had success with Phase 1 and 2 and are ready to bring it up in front of the FDA to get it on the market. They have been working on this drug for like 10 years.

If I do not get picked for the trail drug I will get a cocktail of chemo drugs that Dr. D. has already picked out for me. I will go in one day the first week and get one of the drugs. Then the second week I will get a mix of two drugs and the third week I will get off to either sleep, puke or work! Like with the trail drug I will be monitored. So either way, I will be getting chemo, a chemo the doctor thinks will work. She also mentioned getting me into a trail for a pill that they are working on to fight the growth of sarcoma cells in the first place. That would be great. Because we know that some chemo works for me, however new tumors keep coming back. That is what we need to fix.

She also discussed my pain issues with me. She wrote me a new prescription for a drug to take. She asked me to keep a pain diary and monitor my pain level and how much of the drug I am taking. I got the new pills on (Sunday) and am feeling better.  Of course I also went to Target to get a nice journal and new writing pens! Love an excuse to go to Target. (The Boy also needed new underwear!) I am still juicing and have stopped eating read meat, pork and chicken. I spent 30 minutes chopping up all my veggies and fruit for this coming week.  I feel I need to do my part in this fight of mine and I honestly believe it helps. I felt so good on Saturday after My Man and I made the decision to work with Dr. D. I woke up in less pain. Like the tumors know I am pissed and are going to fight! Little T wants to get better and is ready to work with me!

My parents were a little scared at the change of doctors but when they looked her up and read all about her they called and was like “She is famous for her work in the sarcoma world!” She is a sarcoma rock star. They are feeling much better about the new plan.

I feel good about this decision. The way that it all panned out, the speed that I was able to get in and meet with her; I feel it is meant to be. That this is a door God has put out in front of me and has given me a choice to open it. And I think opening the door was the right choice.

Shout Outs!

Everyone has been so supportive and caring on FB, via text, comments and email. I am not a telephone person, so I apologies for those of you who try to call but I was not in the mind-set to talk to anyone about anything and most of the time I was in bed sleeping!

There are a hand full of you out there that have helped me so much. I hope you know who you are and how much you mean to me. You are my rocks, you make me laugh, smile and give me strength. Thank you soooo much!!! And Karen, thank you for that e-mail and phone number. I owe you on….big time.

Readers! Not sure when I will be able to post again but the flash drive thing seems to be working. I hope you all have a great Monday morning!

Bloody Internet

Readers- I know it has been awhile and I apologize for the delay in posting. The internet here at Hotel Yorba has sucked. I think I complained in my last post about it and well, it has gotten worse. When it works, it is a slow as a snail, an old, old snail. I have been trying to load pictures up for this post for two days now! I have no idea how long it will take this entry to post. It could be two days from now! We are done with it. On Monday we are changing to a new internet provider. Fingers are crossed that this will be an easy switch.

We finally got a new TV on Tuesday, to replace the one that just stopped worked a few weeks ago. It is 47 inches big (thank goodness for Costco). WOW. That is big for us. It is crazy how big TV’s are getting now a days and how they can’t last past 5 or 6 years. :|

Updates

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Band of Horses

We had a great time last weekend. We went to the Forecastle Music Festival in Louisville, KY. It was the first festival for The Boy and the first I have been to in a very long time. What a wonderful job they did! There was plenty of space, lots of stages, food, bathrooms, places to chill and great music. The Boy had a lot of fun as did his parents!

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First Bourbon Mug

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Yummy Tea!

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Waiting for dinner in Nashviille, TN

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Free Photo Booth fun!

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Tired of being in pain and being tired!

So I guess I put the fact that I am going through chemo out of my mind for a while. Ignored it. Went along as though nothing was going one.  Well, this past week it has made sure I not forget about it. It has not been the best week for me. I am very tired. Been going to bed before The Boy does and been passing out taking naps during the day. When I am awake my side/ribcage has been killing me and I just don’t have much energy to do anything. The pain medication that Dr. Read has given has helped out some but the pain is still there. I have also been having some issues with my left leg, swelling and burning sensations, which I think is a side effect from the chemo. Not good. I had to make the change back to the super soft toothbrush (still had one left over from last summer) and special toothpaste. The inside of my mount is getting pretty sore. I have not been working out either and I rely need to because I have 24 Hours of Booty coming up!

What I would love is some energy to clean the upstairs, the refrigerator, juice more (been drinking bottled green juice), clean out the garage, do laundry! Yes, I want to be able to do these things. Instead I just want to fall asleep. I need some ENERGY people! I wish they sold some in a bottle.

I had more pictures I wanted to post but the internet is not working with me. So I think I will just try to post this and hope for best! Have a great day Readers!

Updates, broken things and shout outs!

Readers! Things have been crazy here at the Hotel Yorba! First we had a full house for almost a week. My parents, brother, sis-in-law and niece where in town for about 5 days last week. They participated in the Merchants Market here in the ATL. They both seemed to have a great show and got the word out about their wonderful products, The Christmas Web and Ginger Leigh Designs. Check them both out!

The Boy and I got to hang out with my youngest niece, ETG, for a few days. We had a blast. She is a great girl. She hung out with me all day Friday and went with me when I hit the bank, chicken feed store and office. She even went to work out with SK and I at the gym. She rocked it. When my hour was up, she was like “we have to go?” Oh to have the energy of an 11-year-old!

Our internet has not been working for the past few days, which is why I have not posted anything. It has been very frustrating. It is crazy how much we depend on a good internet signal. We have a call into a cable company to try to run cable internet but that is not for about two weeks. Our current service sucks!  And then on Sunday, our TV in the family room died! Just stopped working. It will not turn on! Everything else turns on but not the TV. They really don’t make them like they use to do they? A TV used to last 10+ years! Now you are lucky to get one the lasts 4 years. Total Bummer.

Round 2

So far the side effects from round 2 have been the same of Round 1. I am tired. Like really tired. Like lay on the couch, pass out, wake yourself up snoring and add in some drool, tired. The pain in my ribs is still there but I am getting some new drugs today and hopefully they will help take the edge off. I am doing my best to keep being active because I know it will only help me in the end. Must stay strong!

2014 24 hours of Booty!

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I am off to a wonderful start of my fundraising for the 24 hours of Booty ride I am doing in October. I have halfway to my goal! Woot! Woot! A big shout out to the following donors and recruit!.

Christy M., William H. Family, Judi R., Robert H., Vicki H., Alan V., Geri T., Michelle H. and Dona C. 

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You guys rock! I am starting to work on my training program to get ready for the ride. I will continue to work out with SK twice a week when I am able. I am also going to start riding the exercise bike during the week, keep up with my yoga and go biking at the park on the weekends. I will admit, it is kind of hard get the energy up to do it all but I will do the best I can.

The Girls and Garden

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Nice waddle!

Zazzles and Terrance Peterson are doing great. They are about five months old now and hopefully should be getting ready to lay some eggs in the next month or two. Zazzles cone and waddle are growing in pretty fast and her little chirp is now a lower toned one. Kinda sounds like she has a frog stuck in her throat! I am sure it will settle down soon and she will settle on a nice little chirp. Terry Pete’s black feathers are so nice and shiny. In the sun they have a dark green shine to them. Her cone and waddle are still pretty small but she seems ok with it.

The garden is doing ok. The tomatoes are growing well (cherry is doing the best) except for the fact there is a little bugger who is grabbing some of the lower hanging green ones and eating them. But does he eat all of them? Nooo! He eats half of it and then leaves the other half for me to find. Little bugger! So wasteful!

My corn looks like it is growing well (really I have no idea) along with my peppers, garlic and edamame. I have gotten a few small cucumbers but no squash yet. Whoever was eating the okra has stopped and there are some okra buds popping up. I am thinking next spring about buying more bags good soil and trying to get my soil in better shape. Any suggestions? I have used egg shells, coffee grounds and some compost. The dirt that was originally put in there was not good  at all but over the years I have added to it, so you think it would be in better shape now. But really how can you tell? I need a garden guru to come out and give me a few lessons.

Readers! I hope you are all having a good week so far. Stay Strong and Be Safe!

 

24 Hours of Booty!

Readers! It is official. Team Hotel Yorba is up and running for the 24 Hours of Booty ride in October here in the ATL. What? What is it you ask? Read below!

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More than just a ride.  

24 Hours of Booty is a community committed to put cancer in its place. This 24-hour cycling event raises local and national funds for cancer-fighting programs. 

Held on a traffic free loop, the event brings together cyclists of all abilities. The only requirement is a bicycle (or unicycle!) and a passion for fighting cancer. When you ride, donate or volunteer at 24 Hours of Booty, you get so much more than miles on your bike.

We are community.  We ride as family, united by a common goal.   
We are achievable.  Ride one mile.  Ride one hundred miles.  It’s a ride to see if everyone can win. 
We are survivors. Cancer doesn’t own us. We will put it in it’s place. 
We are fun.  Cancer is serious business, but the ride doesn’t have to be.
We are focused.  We have a one-track mind. We exist to fight cancer. We fight as one.

We ride for your mom, your brother, your best friend and your coworker. We ride for the people just diagnosed and for the people fighting a hard battle. We ride for those celebrating years of remission and for those who are running out of time. 

We are all 24 Hours of Booty. Share the videos below with your family and friends to let them know how 24 Hours of Booty is active in your community.

Do you want to ride with Team Hotel Yorba? We would love to have you come down, up, or across and join us. Here is the link if you ant to Ride. Are you interested in volunteering? Check it out here. Are you interested in donating? This would be a WONDERFUL tax write off for 2014!! My page is here. If you want to join my team you can do that from either my home page and click the button on the right of the page or go here.

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If you have issues just let me know and we will work on it. Please remember!!!! You DO NOT have to ride for the whole 24 hours. I plan to ride and rest and then ride some more. Read all about it if you are interested or if you are local and have a tent your can lend let me know! ;)

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Readers! Come join us!!

PS…Rebecca took a picture of me while I slept during my chemo!

Sleeping beauty

Sleeping beauty