Signing off on Clinical Trial

Okay, so yesterday was so busy! I started the morning with my good friend, Terry. He said come over before my visit to sign off on all paperwork to be included in a clinical trial popular in Italy and somewhere else. My brakes are still bad so I left my car with the mechanic and Terry drove me. Dr. Chawla's office had me do an EKG, and seven vials of blood from my brand new port. This is why I love ports....I don't even feel the stick of the needle.

I signed away and this morning find out if I was approved for Yondelis. Good thing, the best thing, is no hair loss, or its minimal, so keep your fingers crossed for Yondelis. The bad part...383 for the stuff that keeps you from vomiting your brains out, and Medicare doesn't approve it...sucks! Its called Enemis or something like that, it's three pills....THREE. Next is Sundulac patch, an transdermal patch...is over 200. Finally over the counter drugs, which don't work well, they told me already. The costco in FV has one pack of the most expensive, I'm thinking the GG has one too, but I am trying to get them approved by the doctor's office. Still takes 24 hours so no matter what, I am screwed today.

I didn't nightmare last night, thanks to two xanax I took. One at 10 when I went to bed and another at 3 when I woke up sweating. Too bad Medicare doesn't cover anti anxiety pills either...with or without the approval from the doctors.

I'm wearing my crazy sexy cancer goddess shirt today. Check out their website. www.crazysexycancer.com. I think that's it. I am bringing the Girl in the Flammable Skirt, thanks to Miranda. I am getting tons of support from Shannon and my family, but sadly and heartbreakingly missing from my life are the children of Dan'l. One is mad because my mood swings and fear of dying are too much and the other...well, I am just at a loss as to why I don't hear from them...I miss everyone horribly and wish they would just let it all go and call me because I wouldn't mention it at all....I would just be happy to hear their voices.

I came home last night and helped Bruce with my car until almost 9PM. He changed the brake cylinders, both, the brake shoes on the back and scuffed up the drums, then moved up front to the pads and replaced them and had my rotor's turned...OMG....I can stop! How many accidents could I have avoided if I had done those a long time ago. The back shoes....were original to the car, so they had crystalized and had ford written everywhere on them...so they looked like they had pad left, but it was not working at all.

The clinical trial signing off was scary. Many pages of signatures saying I understand its a clinical trial, but I am out of options. I can't do AIM anymore because my lifetime doseage of Adriamyacin is past. So its Ifosfamide and Yondelis or surgery....not even radiation anymore, at least not to my bum. How do I say that without being embarrassed? I call it my hip, my muscle, a place where I have muscle and fat....but to say, oh I have butt cheek cancer....haven't you heard of it? It's funny.

I will call the only other person that has my cancer, exactly....Russ Lycan....he helps me deal with the reality of it all and tells me Chawla's miracles saved his life...he is past 5 years out.

Acrylic Nails

I talked to my doctor and she said that she is trying to get a law passed that the application, chemicals and the wearing of acrylic and silk nails is known to cause cancer. I have to have the nails removed asap.

I need to have my daughter Shannon who has a photography business, do a photo shoot of me so I can remember how I look, and have progressive pictures of what cancer does and chances that occur.

Remember to live each day to its fullest. You don't need to leave the country or the state to personally see something breathtaking....discover America. I am determined to see a place I have only read about. Havasupai. I heard it is breaktaking. It's my bucket list, along with a wish for a buddy sky dive with Brian from Mark and Brian at 95.5 KLOS.

Keep you fingers crossed!

Sandy

Port Surgery

The port is in. Left side this time, not so bad. Wait, not so bad on location. It is so painful. I don't remember anything except it was done under general anesthesia. I awoke to a lot of discomfort.
They gave me a shot of something and the one nurse, developed a twin. I didn't know which of them to answer. I'm still groggy.

It was done at the beach, which and it was a beautiful day for a surgery. I'm reading the Girl in the
Flammable Skirt. Chemo next week.

Port Surgery worries....

I'm scared about the reality of Monday...tomorrow is my last day of pretending it isn't so... I want to be lost in the blissful childhood imagination that everything is perfect and I have no worries...but tomorrow when I lay down my head and fall asleep I will awake to the harsh reality that a monster inhabits my body...a monster that wants to steal my future.

Once again, I am forced to fill my body with poison to kill the beast, allow masked strangers slice away the aliens inside and cross my fingers that what they choose will conquer this demon.

It's a lot to absorb and accept....I wish it wasn't happening to me again...and I look so bad with no hair, I never mastered the art of wig wearing, and I can't accept my body, so how can I expect another to accept it?

I am making a wish right now...my wish is to allow me to awaken to a world I used to enjoy. The one where there are no thoughts of death or illness. Where little girls like me admire their image in the mirror and have fantasies of princes coming to take them away! Why can't I spin in the mirror in the beautiful puffy dress my Mom made me and once again marvel at how much I resemble a princess?

I want to mark something off my bucket list. I want to do something to free my soul, scare me to death, and make me smile....I want to buddy jump out of an airplane and float to the earth...any one want to offer? Any skydivers out there?

My children are all away doing their own things, family is busy with their lives, so my dear friend (Jackie's best friend) will drive me to the hospital and pick me up after the port is in...I should be home by noon on Monday.

A full day of traveling

So I had a very busy day Monday. At 7am I went to Los Angeles to see Dr. Brien, who did not think the tumors were big enough to remove surgically, but he would have to see the actual CD of the scan and not just the report.

I drove to Newport Beach to make a 11:30 appointment with Dr. Brien's sister, Heather, a Vascular Surgeon. I did all of my labs and X-rays and EKG to get the port-a-cath installed on Monday.

Next, I drove back to Santa Monica because I wanted that CD of the CAT scan to bring with me. I talked to Dr. Chawla's office and they told me that I was being considered for a clinical trial instead of the AIM protocol. Good news for me! Two days a week instead of five for chemo.

I drove to Dr. Jacoub's office and showed him the scan, he also agreed the tumors were too small to remove surgically, but he told me not to get the port and to wait a couple months to see if they grew. I was stunned. I talked to Mary Ann and she told me that if she was diagnosed with cancer, she would pick Dr. Fink to care for her. If her children were diagnosed with cancer, she would pick Dr. Fink...I slept on it and decided that it was Dr. Fink that managed my care the last time, and the person I trusted, Mary Ann, was in her own way, telling me to go back to Dr. Fink.

So now I am armed with a CD of my body. It is awesome. If I can find a way to upload it for you I will! It shows my body, slice by slice, like they cut me like a spiral ham, starting at my shoulders, so I can roll the bar on the mouse and scroll through my body and even to my naked eye, with no training, found those tumors. They are small, which makes me happy. I wonder how fast it would take for them to grow. The last time, it grew fast! From a walnut to a mango size in just 8 weeks.

So with the worst week I can imagine, I wanted something to behold that was glorious and pure and beautiful...I was granted my wish. My sister Debbie texted me at 3:00am in the morning she said Isiah Anthony had arrived. Hayley had her little baby boy. And they invited me to come to the hospital to see him...so I was like the first! I needed a beautiful, delightful sight to behold and there he was, all new and fresh and perfect and his mommy, all flushed and relieved. Then there was daddy, overwhelmed and words eluded him this fine moment...the baby boy took his breath away, I'm sure. And Debbie...the proudest grandma. I was honored to be allowed to share this moment in their lives, and thankful for having a moment of joy to concentrate on.