One Big Sweaty Mess

Good Day Readers!

Me on Friday

Me on Friday

How are you this Monday? I am actually feeling ok. That is big! Huge! Friday I was a mess. Worse day yet. I was down and out for the count. I mainly laid on the couch and tried nhttp://myhotelyorba.com/?p=3462&preview=trueot to move. Everything hurt. My ears hurt. My toes, my back, my side, my head…oh my bloody head! Massive headache along with a sore throat and clogged ears. My ears!? What is up with that? They have been feeling clogged/stuff etc. almost everyday now. I have heard about other people on the same chemo I am on that also suffer from it. So annoying.

Saturday I felt better until the afternoon. Then my stomach started acting up. Ugh. Grab the tummy meds! Grab the wastebasket! Have I mentioned the sweating? Ick. I am sweating so much during the day/night. We have maroon sheets on the bed and this weekend you could see white sweat lines on them! Gross! I wake up during the night hair soaking wet, shirt and pants wet and wet stain on the pillow. I move closer to My Man to get to a dry spot until I bump up against him. Not fun. Sticky. When I do wake up, I feel like I have run a marathon, sweat and all.

Finally on Sunday I broke out of it (mostly). I had my energy back! Woot! I vacuumed, mopped the pets bathroom floor, cleaned the pets bathroom, put The Boys clothes away, put my clothes (that were piling up so high) away, cleaned the gross shower, cleaned up the kitchen, did work to get ready for work today. And more! I was energized bunny, sweating my entire way through the whole day. I could not stop sweating. Thank goodness My Man had taken The Boy to see a movie so they have to see my hot mess self. It felt so nice to have energy, to do something.

Feeling Better Today

Feeling Better Today

My Man was kind enough to change the (gross) sheets last night so I had some fresh one to gross up. Today I went into the office for work. Shocker! I had a face to face meeting and was worried how I wouldn’t be able to handle it. I had my moments when all I wanted to go was pack up my car, drive home and go to bed. But I kept on going! Go Bunny Go! The meeting went well, I got caught up on some work and I felt like I accomplished something.

Look what I found when I got home!

The Glove state!!

The Glove state!!

How cool is that?! Super cool! Thank you Andy and Dee. You people rock! Can’t wait to see you on Friday! I also received some beautiful flowers from my Great Aunt Doras. She is my GREAT Aunt. She is in her 90’s and is thinking of me. She Rocks!!

Pretty

Pretty

Have a wonderful night Readers. Be Good and Stay Classy.

Hair, Hair Everywhere!

Readers, painkillers, when used as instructed by your doctor, can be a marvelous thing. On Tuesday I was able to finally pick up my main pain controller. I had been having to lower my dosage for the past few days due to the fact that I was running out of pills. I got a new prescription last Friday but was not able to get it filled till Tuesday. I was a painful few days. I was a mess. My pain level went from a 3 to 4 up to a 7 or 8. And when I coughed or got the hiccups… sweet son of pickle! It hurt so bad, like being stabbed over and over again in the ribs. Ugh. It sucked!

Now I am not saying life is perfect now, there is still some pain. I got a “booster” shot Wednesday morning. It effects my bone marrow by making it grow and get stronger since it is being depleted from the chemo. This is a good thing but it is such a big boost, it can hurt. Like right now. I am at a pain level of around a 4 or 5 but in the center of my chest there is a pain that throbs and is spreading to my other joints. It is kind of hard to explain and I fear I am not doing a good job at it. Sorry Readers. Anyway, when Candy called me last night (she calls almost every night) she warmed me that this could happen and that I could feel it in my chest area along with other parts. I tell, you if it is not one thing, it is another!

The Boy

A few posts ago I wrote how The Boy got in trouble and was being punished. Can I say that it has been a great week with him! I mean wow! He has been really good at home. Who knows how he is being at school but here he has been great. He gets home, gets a snack and works on the homework he did not do on the bus.

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Then we have 20 minute reading time (part of homework). I set out snacks and we both sit at the table and read for 20 minutes together. He is reading a book sores and read through book one pretty quick. He is reading all the time now. One of his punishments is an 8pm bedtime (instead of 9pm) and he gets to stay up till 8:15 reading in bed if we say it is ok. He has his watch that his grandparents gave him and shuts everything off then his time is up. After reading we usually go out to feed the girls and have a talk. We talk about all kinds of things.

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Like body hair!! It is a growing Readers! Not only is it growing in his pits, but it is on his legs and toes and other areas too! Woot! We discussed why we have hair and how back in the day people were covered with lots of hair as a form of protection and warmth. How over the generations we humans don’t need as much as we use too and therefore we are not as hairy as we use to be.

How you doin'

How you doin’

Another topic we discussed is 4th grade dating. DATING!! Wait? What? That is what I said to him when he brought it up. He said it was like a rule that you waited mid year to date in the 4th and 5th grades. Everyone knows about it. You know about this, right Readers? Where the hell have I been? I asked him where he would go (pizza place), how would get there (walk), all kinds of details. Needless to say, it was a long conversation and some guidelines (you date when we say you can), rules (you do not make the girl walk or pay) and suggestions (maybe a day movie first) were discussed. Very entertaining.

Thank you Heidi!!

Thank you Heidi!!

Wait. What???

Wait. What???

Refuses to look at me.

Refuses to look at me.

Have a great weekend Readers! Be good to yourself and others!

Booty Time is drawing near!!!

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24 hours of Booty!

Readers! Some of you have been so generous to be and my fund-raising for 24 Hours of Booty. I have around 42 days to get ready for the ride and am already thinking of the fun stuff like shopping!!

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This weekend we will be going to REI to look at tents. They are having a Labor Day sale starting on Friday I and I plan on checking it out. I am looking for a tent that can fit two adults and one child. I am not sure if My Man will spend the night but I know The Boy is all ready for it. I will also need to bring in my bike for tune up. I don’t think I have brought it in since I bought it, so it is due for one. Luckily there will be food set up, part of the fee goes for meals, so I won’t have to by too much camping gear…unless I just feel like it!

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My dad and I are getting a white tent to be out home base from my brother. Yo! Brother! Come join the ride with us! That goes for all of you out there. I would love to more to join my team. The more the merrier! Check us out at Team Hotel Yorba!. There is a registration fee and you have to raise at least $200.00 to ride. What a wonderful tax write off for your personal taxes or small business.

If you live far away and still want to participate you can always donate to my personal page. My goal is to raise $1,500.00 and I am getting close! Please help if you can. Why? Because it is a dam good cause that is why! Plus I really want to get the jersey. :)

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I want to send a bog shout out to my sister-in-law Robin. She did the ALS ice bucket challenge and asked that the people she challenged donate to my cause instead. How cool is that? She has nothing against ALS but is just a kick ass woman trying to help me out (she knows I want that jersey). She ROCKS!

Late and Breaking!!

Guess what Readers! I have been asked to be interviewed by the 24 Hours of Boody  public and media relations! What? Me? I got an e-mail form Jackie T. asking me if I would be interested in giving an interview about My Hotel Yorba Team and my experience as a cancer survivor, current ass kicker. My interview will be today around 10:30am. I will let you all know how it goes and post the interview (if I give a good one) once it is done. How cool huh?

Round 1 Part 2

New scarf

New scarf

Readers! For yesterday’s chemo treatment I thought I would wear one of my new scarfs and wear some make up. So fancy. What do you think? So pretty! I love the soft pink of the lace. My Man came to the hospital with me today. I took little cat naps. Due to the study they have to check my vitals every 15 minutes for 2 hours! So you really don’t get to get a good nap while you have to open you math for a thermometer and hear monitor.

Cold!

Cold!

The infusion center go pretty full while we were there. It is crazy how cold they make it in there. I had a sweatshirt on and two warm blankets. I think next time I will have to wear a warmer jacket. I brought my iPad to read my new book.

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I finished The Silkworm and am now reading Big Little Lies by Liane Moriarty. So far it is pretty good. I have read many of her is the past and have enjoyed them all. They all take place in Australia so there is a lot of tea drinking going one just like in The Silkworm. makes me want some hot tea!

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I thought about down loading a movie or tv show to watch but could find anything that I was interested in. There are TV shows but I know I will get hooked and end up buying the whole season.Am I ready for that commitment? Maybe I should just bite the bullet. Any movie suggestions? Any TV suggestions?

This morning I went in bright and early and got what I am calling my “booster” shot. My immune system will be going crazy  after this second dose and the shot should help me level out and not get too sick. I was super tired driving there (along with having serious stomach cramps) but luckily it didn’t take to long at all (so speedy). The shot was given to me in my stomach and then I was free to go. I came home and proceeded to take an hour nap. I had hoped the shot would have given me some extra energy but not so. Pus the stomach cramps are back. I took some pills for that which will hopefully kick in soon.

New Scarf #3

New Scarf #3

I am going in to my office to look at some paperwork and then I am treating myself and getting my nails done. Hope the nap was long enough to keep me awake! Have a Happy Wednesday Readers!

 

Round 1, Part 1

I'm ready!

I’m ready!

Round 1 Part 1

Hey Readers! Well, I survived round 1 part 1. Have I told you how on-time the people at the Georgia Cancer Institute are? Even ahead of time? Well, they are. Rebecca and I got there about 20 minutes before my appointment time and by my 9:30am appointment time, I had already had my blood drawn and port accessed. In what world does the happened? I met with a doctor (none was obj vacation) and he reviewed everything I would be going through. Of course Candy, who I think is really in charge of the whole thing, was there too. After my meeting with the doctor I had a quick EKG done. I wasn’t sure why I had this done since I had one done a week before but they are so fast and painless it wasn’t a big deal.

It was then time to go to the infusion center. On things cool about the GCI, is that everything is on one floor right next to each other. At Winship I was going from one floor to another to a different building, up down and all around. Here it is all at one place. The Infusion center was cold and really quite. There weren’t that many people there so we got to pick out where we sat.

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Getting comfy.

Getting comfy.

I was offered a pillow and warm blanket. In all, we were there for an hour. They had to take my vitals every half hour. There are a few things that they have to do that are different since it is a clinical trail. Everything had to be done a certain way according to the sponsor of the trial. There were no individual TV’s just a big one for every few chairs and they were set to close captioning. Law and Order SVU.

It go busier the longer we were there. My nurse was super nice, as is everyone there is. They have a section where you can get water, coffee and tea and there was a volunteer on the floor helping people out if they needed it. When I finally get over all this shit, maybe I will sign up to be a volunteer. I think I would like that. A lot of people were all wrapped up tight and sleeping. You could tell that they were going to be there awhile. I was the youngest one in the place. Not to sure how I feel about that.

After I was done and my port was closed up, I went and made my appointments for the next month. I will be going back once a week to have either my blood drawn, get a shot or have treatment for the next month. It is a good thing that GCI is close by (takes about 15 min to get there) and that they seem to be on time. It shouldn’t be too big of a pain in my pasty white buttocks. Now if I could only stay awake….

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.

 

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!