Category Archives: The pain in my ass little c

Round 1, Part 1

Posted on by
5
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.

IMG_4772

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

Posted on by
9
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.

 

Monday, Monday!!

Posted on by
2

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.

IMG_4723

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.

IMG_4731 IMG_4730 IMG_4729

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

IMG_4739

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!

Posted on by
5
IMG_4705

Panny hiding from the vet in her carrier.

 

IMG_4709

Nail trim

IMG_4708

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!

Round #2

Posted on by
4
I did not draw this!

I did not draw this!

Readers! Today was round two of chemo. Once again the wonderful Rebecca A. came with me on my journey. She was at my house at 8am sharp and we headed downtown along with half of the citizens of ATL. I was scheduled to see Dr. Read today. They were running right on time and after my port was opened it wasn’t long before Dr. Read came in to see how I was doing. While driving down to the hospital Rebecca took notes for me about items I wasted to bring up with him. I gave him my list of complaints.

1. Have bump/cyst/thingy on my back by one of my incisions.- He checked this out and have happy to see that when pushed on, it moved around. Tumors don’t usually don’t move. He thinks it may be a cyst caused my the surgery last October. He will have a better idea when the scans are done on the 31st of July. He did say I could get a massage if I wanted to but not for them to push down hard on it.

2. Still having major pain under my right boob/rib/incision areas. The pain is pretty bad, worse in the morning and it has effected my sleep. Sometimes I even find it hard to push down my veg when juicing! -He is not 100% sure this is caused by a tumor. He stated that you usually can’t feel them like that. He thinks it may be a nerve growing back and miss firing signals to the rest of my body. I have to agree with him because I can I know exactly what I was doing the moment it started to hurt. I was in yoga and I had just gone up in a should stand when BAM! Son of a Sweet Pickle!. Like the cyst/bump/thing we should know more after the CT.

3. Sleep. It is hard to do. I have been waking up in the night every night in pain and have been having trouble falling  back asleep. My won’t stop racing and I am sad to say I don’t always have the most positive thoughts. But that is to be expected.- Dr. Read, Rebecca and I discussed my pain management. I love how he uses everyday situations to describe things. Todays was Tequila vs Beer! Ha! Anyway, I have two new prescriptions that will hopefully help me get my pain under control and gel me sleep through the night.

Before I passed out.

Before I passed out.

After my appointment we went down to the infusion center and I got hooked up. They gave me a Benadryl and dam! That thing knocked me out. I had such a hard time staying awake that I finally gave up and took a nap. My Man wasn’t pulling my leg when he says I snore. Rebecca said I was lightly snoring too! Wonderful. She was able to sit back and do some work and take a test for her continuing education credits. I got home around 2pm so all in all it wasn’t a horrible day.

I did not draw this!

I did not draw this!

At this point I feel fine. My white blood cell count was kinda low but not low enough for me not to have the chemo today. It is expected for the count to drop (red blood cells too) while going through chemo but you have to keep an eye on it. I was told to stay away from sick kids and to wash my hands a lot. No licking the floors of bathrooms!  I have my barf bucket by my bed just in case it starts to effect the old tummy. I think it will take a few days to hit me if it does this time.

Readers, I hope you are having a nice Thursday and enjoying your summer. It is hot in the ATL but that is the case in the summer down here. More info on 24 Hours of Booty Ride coming soon!

Round 1 Chemo post

Posted on by
8

Readers, I slept in today till 8:30am. I mean what the hell right? I was going to have a busy day today anyway. I did a little work, spoke to a client about new  a job offer she got and around 11am my parter in crime, Rebecca, showed up.  We made great time and got to the hospital around 11:30am. I was hopping since I was there so early, that I could get the show on the road so that we weren’t at the hospital all day. HA!

IMG_4413

First they accessed my port. I have a duel one so they have to do it twice. The needle looks like a long push-pin needle. It doesn’t hurt that bad if you have a good RN doing it for you.

IMG_4414

Look at all the stuff they use! And that is just half of it.

IMG_4417

Ouch!

IMG_4420

Boob shot

After that was taken care of we went back to the lobby and to another set of elevators to take us the 4th for my Echo Cardio Gram. I have never had one of these done before and had no idea what to expect. Basically it is an ultra sound for your heart. My appointment was at 12:45 and we got there in plenty of time. However I did not get in till 1:15pm and chemo was to start at 1:30! I hate to be late!

IMG_4422

The test took about 30 minutes and it was pretty cool to see my heart up on the screen doing its thing. It looked good to me, pumping away but what do I know about hearts. Not. A. Thing.
IMG_4423

We made it to chemo at 1:45pm to find out that when they accessed my port, they should have taken blood. Instead I had it taken late and now we would have to wait an hour to get the results back! Son of a Pickle!

Got my port all fancy!

Got my port all fancy!

IMG_4426

After the RN took blood Rebecca and I took a walk outside, went into the cafe to get a drink and snack and then sat in the lobby to people watch.

My snack

My snack

At 2:45pm we walked right into the fusion center looking like we were at a restaurant waiting for someone to set us at our table! Soon they found me a chair that had its own tv. Nice. Rebecca and I watched HGTV.
IMG_4428

IMG_4429

Chemo is more fun with friends!

IMG_4431

We were next to a woman who was not feeling well at all and had a 103 temperature and the chills. Poor thing. We felt so bad for her. I think she was going to have to be checked into the hospital. She and her husband were watching the World Cup on their TV. I was the youngest one in there by far. After 30 minutes of premeds and a 30 minute break, the chemo began. Rebecca was really into everything and asked all kinds of good questions.

Red Devil

Red Devil

About a minute into the chemo she was like “It’s RED!”. Oh no! I have heard of the chemo that is red. My friend Gerri had it and they call it the RED DEVIL. NOT GOOD. I sure as hell hope it won’t make me as sick as her or lose my hair all over again. Sweet Pickles!

The chemo ran about an hour and then we were all done. It was 5:30pm. Though I hated that we had to wait an extra hour (never agin will that mistake be made) it wasn’t all that bad. I credit this to Rebecca being there. She was able to come into all the rooms with me and watched all what I had to go through. She was really into it. Asking a lot of questions and keeping me company. I am really glad she came. THANK YOU REBECCA!

I will be going back in three weeks for round 2. I hope in a couple of weeks I start to feel the pain in my ribs ease off a bit. That is all I ask. Shrink a little LT. You can do it!

My LT (little tumors)

Posted on by
6

IMG_4387

It’s Monday Reader’s! How are you doing? I woke up an empty nester! The Boy is at sleep away camp. My Man and I dropped him off yesterday at Camp Winnataska in Alabama. Four of his friends from school are also going so we feel much better knowing his best buddies will be there with him. I think he was excited but also a bit nervous. He told me he is just going to think about like he is spending the night at a friend’s house. We wrote him letters also with his grandparents so he will get mail each day. I also purchased him some goodies that he will get throughout the week.IMG_4391 IMG_4379On Saturday we celebrated Timber’s “Gotcha Day”. I can’t believe it has been one year since he has come into our lives. He has brought such joy to our house. We went out to lunch and then to his best friend, Rebel’s, house. Rebel’s mom bought Timber a beer made esp. for dogs. How nice!! She also got him a yummy cookie.IMG_4376

Yummy!

Yummy!

Whatcha Reading?

41EppiIFn6L._AA160_

The Son by Jo Nesbo- I finished listening to this one a few weeks ago and like with his Henry Hole series, I loved it. Jo Nesbo is a fantastic writing and I suggested anyone who enjoys crime/mystery books check him out.

Unknown

Radical Remission: Surviving Cancer Against All Odds by Dr. Kelly Turner- I started reading this after I saw an interview Kris Carr did with her.

n her New York Times bestseller, Radical Remission: Surviving Cancer Against All Odds, Dr. Kelly A. Turner, founder of the Radical Remission Project, uncovers nine factors that can lead to a spontaneous remission from cancer—even after conventional medicine has failed.

While getting her Ph.D. at the University of California, Berkley, Dr. Turner, a researcher, lecturer, and counselor in integrative oncology, was shocked to discover that no one was studying episodes of radical (or unexpected) remission—when people recover against all odds without the help of conventional medicine, or after conventional medicine has failed.  She was so fascinated by this kind of remission that she embarked on a ten month trip around the world, traveling to ten different countries to interview fifty holistic healers and twenty radical remission cancer survivors about their healing practices and techniques. Her research continued by interviewing over 100 Radical Remission survivors and studying over 1000 of these cases.  Her evidence presents nine common themes that she believes may help even terminal patients turn their lives around.–Amazon.com

So far I have read the first three chapters and am hooked. The stories of the survivors are very uplifting and encouraging. I am using what I am learning in my own fight to get my LT’s (Little Tumors) healthy again. I have decided not to hate them. Not to want to kill them. They are just blood cells who minding their own business, working hard for me and the bam! They get sick. I know the feeling and I want to help them get better. I want the big LT to lose some weight cause he is really hurting my ribcage. So I am going to be positive, tell them I will help them get better. Watch what I put in my body, how I treat it and to breathe. Most people don’t really breath. I don’t need the negative energy in my mind and body right now. Who wants to go around being angry all the time? I know there are some out there who think the chemo, radiation and drugs have all gone to my head and maybe they have but this feels right for me. Of course when I told My Man about LT he said he would just be happy to kill the little fuckers. Oh Well!

 Whatcha Reading?