Becoming a vampire.....

So, I just finished my blood transfusions. I had two units. Just after the transfusion finished I decided it was life or death that I get up to pee.... Right when my door opened for blood labs to be drawn.... Now, I can either tell the kid "hold on, I have to use the restroom" but, I decided the cute little 12 year old blood tech guy didn't need to be sitting on my bed 2 feet away while I roll me and my cart into the bathroom and release what had to have been 47 gallons of pee (and likely a few farts from the sheer "ahhhhhhh" of release). So I waited. Anyway.... Blood labs done, there may or may not have been a bit of flatulence, I'll never tell. But, what I noticed was my legs felt strong! I was no longer "drunk ET" trying to make way to the bathroom, I saw my destination and made it there without bumping into any obstacles along the way! I walked to the sink in my room and stood there washing my hands without wobbling and made it back to bed without huffing and puffing. Woohoo.,... I'm like Bella - I like blood!!! I think I'll add it to my weekly regime, I'll take a nuepagen shot, an IV bag for dehydration.... Oh, and throw in a unit of O neg for me! That'd be great! 

Pneumonia 1 - Me 0

So, I'm in the hospital and all these Dr and Nurses are buzzing around like this is a super big deal..... I WANT to tell them, I'm fine... This is not "it" I'm not going to die this time around.... I feel it. I still feel strong, I'm still fighting.... But, then my body says otherwise and spikes another fever or we get blood labs saying I have no red or white cells left. So my brain and body are not in cahoots. My room is on complete isolation. I've heard my door has signs all over it saying no visitors, no fruit, must wear suits of armor to enter etc... But, I'm not allowed anywhere NEAR my door so, I'm not sure. Even the nurses and Dr (and especially family) have to don gear that looks like a scene from Breaking Bad to enter. This means no leisurely strolls (like drunk ET) around the ward like before, I'm stuck in this room 24/7. Again my brain says I should start doing laps in here but, my legs are like..... Ya, NO! Drunk ET prevails and I fall/crash-into my bed.

My first foray into the (il)legal....

Ok, so since I've been diagnosed everybody (and I mean EVERYBODY  from friends to Dr.'s to grandmothers) have been telling me to try medicinal marijuana- reeeeeefer. I'm not much of a drug type person, I don't even take Advil until the ailment is so bad I have no other choice. The nausea has been intense from radiation. And getting worse. After 5 days of constantly feeling like I was going to toss cookies I gave in and sent a plea to a few friends that "are in the know" of these things and because I'm a complete dork sent cryptic messages like "hey Hun, the nausea is getting really bad do you have any "medicine" that would help..... Like the kind you eat". The Feds would NEVER catch on to that, right?! They write back "oh edibles, sure whaddya want". So, I have an AMAZING friend who actually researched what would be best to get for me (too much sugar might make me feel worse, don't want to be too high just mellow and pain free etc).... And she brought over a few things for me to try. The first one that she explained "might be the ticket" was a Cheeba Chew made from indica hash (sativa would be stoney, indica more mellow). It's a chewy block, kind of like a square tootsie roll. She said to eat 1/4 of it. I did. First off let me say, I felt AWESOME I had no nausea whatsoever. After about  an hour I sent her a text saying it was wonderful and I felt great but, I'm glad I don't have to go anywhere. After 2 hours though...... Wow. Here are a few of my thoughts during the next several hours:

I can't move.

I'm going to try to move my feet. I can't. Do I have feet? I can't move.

I'm hungry.

What If someone comes to the door? They will know I'm stoned. I can't move.

I'm just going to close my eyes and hope this goes away soon.

It's not going away.

What if I forget to breathe (spent next 5 minutes forcing myself to breathe) started feeling like I was going to hyperventilate, thought maybe I should call 911 and tell them I might forget to breathe.

Maybe I should call Dave and tell him to come home. Can't move to get phone.

I don't think I like this. 

Am I going to feel like this forever? 

Whyyyyy did I do this to myself? 

Do I have feet?

I finally fell asleep and when I woke up when Dave got home (3 hours later) I woke like someone who hadn't slept in months.... Face numbing sleep, I clearly hadn't moved (couldn't move?) and had all of my bodyweight resting on my face the entire time. But I felt AWESOME-no nausea, no headache, no body aches.... I felt, normal. I also managed to GRUB and Dave knew I was loaded when I was eating a very large piece of chocolate cake! Hahahaha 

All in all, it was totally worth it to feel good and get some much needed rest but, as far as dosage I clearly have a few kinks to work out!! 

Radiation- about as much fun as getting poked in the eye. Repeatedly.

 I started my radiation treatment on July 31st... It's not SO bad. There is no pain involved just lots of noises, whooshes and beeps. The first 3 days I was sickkkkkkkk. About 2 hours after "rads" I would start throwing up and throwing up and.... Well, you get it. I started taking Zofran (Ondansetron, which makes me think of a nightclub) the second week but, I'm not really sure it has helped much. It's been pretty miserable and I have to carry my little green barf bag everywhere I go..... And that's IF I can manage to leave the house at all. They say I have had so much nausea and tummy issues because they are radiating my intestines and colon. Yay. 

We managed to get one family vacation in during August and I actually felt pretty good for the majority of it. When I planned it I knew that I couldn't miss rads so I made my appt first thing Friday morning. On my way to treatment I was joking to myself (yes, I talk to myself) "I wonder if I offered my tech cash if he'd say the machine was broken and I could skip it" ... Haha, well I would not REALLY do that but, it was a fun thought. So, when I pull into the parking lot at the oncology center and the tech meets me in the parking lot to tell me that the radiation machine was broken I was extremely happy! On our family trip we had all 5 kids, they each brought a friend, my mom, niece, Dave and I and Dave's mom and dad. We went to Lake Lopez in Arroyo Grande, Ca. It was fun. We saw tons of wildlife including 2 bears, we boated, swam, laughed and ate. Thanks to my mama and Dave for pulling up all the slack it takes to pull off a trip for 15 people! 

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! 

Some photos of "BC"- before cancer

My kids and my mama

My love and I - March 2013

Piper my love 

Me right before my kidney/tumor removal with my NEW kidney from my BFF 

The beginning....

Hi!!! I'm Jeanne (hence the "I dream of" title)

 I am- well was- but am- a healthy happy funny kick ass chick! I'm a mom to 4 great (kinda grown-23,19,17 and 15)  kids and my loves (6yo) daughter. This is my story of cancer.......

On April 23, 2013 I was doubled over in pain at the ER- my appendix was bursting- it had to be, OUCH- it was really painful! After being poked and prodded I started to feel better. I might or might not admit to having farted a few times in the ER which led me to believe that maybe I just had gas and the cute Dr was going to come in at any second and laugh at me. I decided to sneak out. Is that even possible?!?! I got out of the bed gurney-thing and leaned over to put my sandals on for the escape- OUUUUUCHHHHHH- maybe I should stay- back into the bed I went. A few million hours, a CT scan, IV drip, and a few puzzled looks later the cute Dr came back to tell me the good news- I did NOT have appendicitis!! However, I did have a large mass on my right kidney. AWHAT?!?! Mass as in TUMOR? No, I don't think so. Tumor means cancer and I don't have that. Uh uh. The next day,  I was a bit freaked out and pretty much threw a fit until the girl at my GP's office agreed to get me in that day. No, I can't wait until tomorrow I have an alien inside me! The GP sent me to the urologist. Where, again, I threw a tantrum until I got in the next day. He took one look at my scans and referred me on to someone else - sigh! I just want this "thing" (we aren't calling it a tumor yet) out! Finally, the following week I get in to see HottieDr and after CT's, X-rays, blood work etc... He decides that surgery is the best choice. The likelihood of it being cancer is pretty high but, kidney cancer is pretty easy as far as treatments, take it out- heal up- whammo bammo you are good to go on with your life....  WHEW! I get to keep my hair! Now THIS my friends is where I jinxed myself. I had a 7% chance that this "mass" was NOT going to be malignant -ok, ok, not great odds but that night I wrote on my Facebook page that I KNOW I'm special and that I KNOW that I've always done things that defeated the odds so I'm SURE that I will be in the 7%  blah blah blah.... Few weeks later (May 9th) I had a radical right nephrectomy and tumor removal (yes, now it's officially a tumor, boo). After surgery HottieDr came by to say "the tumor was wellllllll unuuuuuusuall". WTH does that mean?! To ME it meant benign- if you are expecting cancer and its different, that means not cancer, right?!?

I'M SPECIAL ALL RIGHT...... The local labs didn't know what it was.... They sent the tumor (slides) to Stanford..... Stanford wasn't sure what it was...... They came back with a diagnosis of high grade liposarcoma but, since it seems to have originated within my kidney (as opposed to ON) they were stumped.

On to the local oncologist who says they just rec'd my PET scan and they found a small spot on my lung and a 3rd tumor just under my uterus (but, deep). He is going to refer me to UCLA however, he would treat me with A) hysterectomy and tumor removal B) resection the lung to take that out C) a round of radiation on all 3 areas and finally 6 months of chemo (5 days on 3 weeks off). Guess I'm not going to keep my hair after all.

UCLA - forget everything you've heard we are starting from scratch. Come back in 10 days, we'll redo your pathology report and meet with the tumor board- until then, just go back to your life. As if THAT'S possible with words like "high grade liposarcoma" "lipoblasts" "3rd tumor" and "sheets of pleomorphic cells" are swimming around in my head. I go back to UCLA on June 18th.