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!

5 thoughts on “Updates! Updates! Updates!

  1. Oh Shay, this sounds so promising. You have to be your own advocate and everyone should learn from how you are handling this very difficult situation. I agree God has opened a door for you. Good thoughts coming your way.

  2. Sitting here waiting to meet the new doctor so excited about this and God does not shut a window that he doesn’t open a door. You rock Shannon-Marie Katherine!

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