Waiting on radiation

Well, after simulation last week they told me it would be a week or so to get my radiation protocol figured out so we decided to head to the beach to camp for a few days before I start feeling too icky. We've had a beautiful 5 days and I've had some great friends come and visit. It's been nice to have some relaxation but, still let Piper have some fun! Enjoying this free time between surgery and treatment to mentally prepare myself for what's to come. 

High grade liposarcoma

Since I have such a rare cancer (sarcomas are 1% of all cancers and pleomorphic liposarcoma occurs in 1 person out of 2 million) I wanted to provide some links so you can look it up if you are so inclined.

I have pleomorphic liposarcoma in the abdomen or retroperitoneum.

This one is easy to read and informative http://sarcomahelp.org/liposarcoma.html

This one is a little more technical but, doesn't sugarcoat a damn thing
http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=en&Expert=99969

A few youtube videos

http://youtu.be/YqPOBPylAX4

http://youtu.be/KbHjsU8vnG4

Radiation simulation day

Yesterday I had my simulation for my radiation treatments. It was pretty interesting. First they made a mold of my body by having me lay on a big flat bean bag..... Then they sucked all of the air out of it until it made a form fitted mold of my body. It ensures that every time I go in I'm in the exact same position. Down to the way my feet are positioned. Kinda neat. Then after lying on the table for quite awhile with laser beams pointing at me and the guy lining me up here and there, he put 3 small tattoos on me (again to ensure the radiation beams are accurately positioned each time). All of that took about 40 minutes- then it was CT scan time..... I'm getting used to the CT's and they don't really bother me.... It's basically like lying on a table and being pulled in and out of a giant donut... Easy peazy but, the noises are pretty loud. Then it was a few more minutes until I was free to put my bra back on and go home. I'm still waiting to hear the words "we don't see any tumor re-growth on the CT". Hoping. Sometimes I can almost "feel" it coming back.... I know it's weird but, it's true. I guess I won't hear for 7-10 days while they work up an exact treatment plan and then I'll "get" to start radiation. 5 days a week for 8 weeks. That's 40 treatments. Wow. He thinks because where they are radiating I'm likely to be sick from the radiation and extreme fatigue is pretty common. Yay. But, you know- what can I do, say no?  

As a side note this morning I was laying in bed reading and eating pretzels, I've been sleeping with no clothes on because I get SOOOOO hot and sweaty at night.  I was putting small handfuls of pretzels on my belly for easier access and I kept trying to eat my radiation tattoo. I could just see it with my peripheral vision and kept trying to pick it up like it was a pretzel. I guess I'll have to get used to it being there. 

I'm hoping to take the RV to the beach for a few days next week before rads start- see ya soon!! 

This is what the CT or giant donut machine looks like. That table moves into that hole and comes out the other side. I'll try to get a picture of my body mold next time! 

Boredom.....

I am not a sick person..... When my brain is ready to be up and going but my body won't let me, I hate it. Don't get me wrong, I thoroughly enjoy my pajama days- those days that I have nothing to do and can stay in my comfy pajamas all day with my iPad and read, take a nice long bath with my kindle, have food delivered to me -THE BEST but, 6 days post-op after my second surgery -I'm OVER IT!  I'm guessing that refinishing my kitchen table or painting the guest room is probably not allowed but, I just cannot watch another stupid housewives of mars show! 

I think today I will attempt to go for a short walk...... The corner market has ice cream, maybe that will be a good enough incentive to make it that far!     

Custody, cancer and more

So Monday was a crazy day!!!  We were up and on our way to court by 7am. My Dave has had sole physical and legal custody of "our" daughter Piper her entire life. Piper was 2 when I met her and fell in love with them both. Pipers bio mom has been mostly MIA since she was born and I've been her constant, her advocate, her mom.  She's a little spitfire for sure! About a year ago "other mom" came back into our lives clean and sober and wanting to be back in the picture. We knew the day would come when she would take us back to court for more. More visitation, more rights, whatever just MORE!  So Monday was that day. It was also the day I was scheduled for my second surgery. Now that Piper is 6 the courts actually need to speak to her so, we were all up and looking spiffy and arriving at the courthouse- with an overnight bag packed for surgery directly after court. When "other mom" came in Piper barely even acknowledged her. Our attorney was ON IT and it was clear within minutes that our mediator wasn't going to change much of anything. Other mom - who pays $0.00 in child support was requesting MONEY from us..... Are you kidding me!?!?  SHE chose to move to San Diego county to move in with her boyfriend and she thinks WE should pay her gas money to come pick Piper up for her weekends..... Um, no.  So all in all other mom was asking for 44 days over summer break - got 2 weeks but, not in a row. She asked for spring break- denied. Asked for winter break- denied. Asked for money- denied. She did get to keep her 2 weekends per month HOWEVER, if she is scheduled to work during her visitation we don't have to allow piper to go AND Piper cannot miss sports, activities or important birthday parties - if other mom can't or won't get her there we don't have to allow her to go. So really she ended up with LESS than she went in with. So much for that MORE. We were ecstatic and the mediator pulled us aside afterwards to tell us what a great little girl we've raised and we are doing an excellent job with her. She also was shocked that "other mom" walked straight out of court without even saying goodbye to Piper. It definitely made the mediator realize she had made the right decisions. 

....and then in a mad rush with 20 minutes to get checked in we were off to the hospital. I was like a middle  school girl coming home from a dance- changing out of my "cool clothes" and into my baggy clothes that wouldn't be tight on my post op incisions and scrubbing my makeup off with baby wipes and ridding myself of all things bling. We rushed in, met with the Doc and I was in the OR in less than an hour. Needless to say we were all pretty nervous and pretty positive the biopsy was going to come back malignant. In the words of the other oncologist "if it walks like a duck and quacks like a duck.... We have to assume its liposarcoma. But, it WASN'T!!!! She ended up removing my inflamed right ovary and an inflamed fibroid but, no cancer!!! I even got to keep my uterus which wasn't expected at all. I was home and resting happily in my own bed by 6pm that night. Since the cancer had not metastasized its unlikely I will have to have chemo!! I'm so grateful for that. Radiation won't be fun but, getting out of chemo was pretty huge! I feel like I was just pardoned by the president! 

What a crazy day. 

I will see the oncologist tomorrow and get the official pathology on whatever the tumor/fibroid thing was. I see the surgeon Monday for a post op appt and then the simulation for the radiation is TUESDAY! I'm actually kind of looking forward to that because it means more CT scans and I will feel more secure knowing that the original tumor hasn't started growing back. Since we didn't get great margins originally, (since we didn't know it was liposarcoma when the tumor was removed they didn't take a lot of disease free tissue around the tumor) it leaves it more susceptible to growing back. 

Have a great week! Xoxoxoxoxox - 

Jeanne 

Piper on her way to court.... She was so nervous! 

Before the giant needles were poked in me- 

Pictures from Relay

No joking around.....

.....when the Dr's hand is inside your body!  I went to see the surgeon that is going to do the next surgery yesterday and she decided to do an exam to see if she could "feel" this new tumor - needless to say this was NOT a fun exam but, being ME  I had to crack a joke along the lines of " my husband is going to be so jealous, I don't even let him do that"..... She started to CRACK UP, while her hand was still firmly planted where the sun don't shine- ouch - ohhhhhh the joy! 

Anyway- the surgery is going to be this coming Monday and I will begin radiation shortly after that. 

This weekend was also my first Relay for Life event. It was awesome and emotional but, mostly just plain fun! It was great to stay up all night with some of my best friends and laugh hysterically. It's funny that the first time since all of this started I actually forgot (for a minute or two) that I had cancer and it was at a cancer event but, it's true -I DID! It was completely surreal to see my face on the jumbo-tron and see all of these luminaries in my honor. These are things I always did for others not the other way around.  Of course, we had the biggest team of all with over 25 people coming and going in my "I dream of a cure" shirts! We also won a bowling party for having the most spirited walkers and I think we had at least a few people in costume for every theme lap. For our very first team with hardly 2 months notice we earned 3k for Relay! My friends and family were amazing and I'm so honored to have been a part of it!