Sunday, September 27, 2009

What am I doing now??? It's always changing.

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Here I am with my new treatment I am trying. 72 enzymes a day.
This is how I really feel about taking all these supplements every day at times. It gets a little old.

I left you all hanging. Before the Art Bra Show I told you how the pain that put me in the hospital was one of the tumors on my liver growing. Of course I went for CT scans, PET scans, blood work and everything was grim and gloomy. Masses were larger and my blood work went WAY up. The doc wanted me to start chemotherapy immediately. I was supposed to get a biopsy of the liver, a new port put in (this time on the other side) and I was supposed to start chemotherapy all before the art bra show. Nice huh?? I friggin HATE chemo. I can’t stand it. I’ve done WAY too much of it. If I keep at this rate I won’t die from cancer, but from too much chemo. I also was not looking forward to more surgery, biopsies etc…

So, of course I freaked out and got depressed. I was close to giving in and doing all of that in one week. Instead I started looking into more alternative things I can do. It led me to some enzymes called Solozyme and stuff called Cesium. The enzymes are pancreatic enzymes that you take in VERY large doses (like 72 a day). What they are supposed to do is break down the protective barrier on tumors and then digest up tumor masses and flush them through your bloodstream to get eliminated from your body. A doctor cured himself from pancreatic cancer with these and has cured many more once he started making these available to everyone. The Cesium alkalizes your body and is supposed to starve the cancer cells to death. That’s as medical I am getting in the blog, but I at least wanted to explain a little how I believe these could help me.

The thing with the enzymes is that as they digest up the tumor cells and they enter your bloodstream you feel like shit. Same thing with the Cesium. Tumor cells are filled with toxins, so a HUGE part of this protocol is detoxing daily with the coffee enemas. Since I already did this, it was easy for me. However, even with the coffee enema you still have a lot of toxins in your body. Let’s see, you feel achy, feverish, nauseous, irratible, tired etc etc… All these symptoms are supposed to be signs that it is working and removing cancer cells. I can honestly say that since I have been taking these, I have lost weight because I feel nauseous a lot, I have goosebumps on my arms regularly and I’m always cold, I am SO achy and I am tired all the time. I think about taking naps a lot and I am NOT a nap person. I’ll deal with this feeling all the time if it means I am ridding myself of tumor cells though.

Why is chemo not the cure??? Well, I talked to multiple oncologists about my situation and I got a certain vibe. The vibe was that I was not expected to live long even with the chemo. If that is the case, screw the chemo. Chemo is not a cure anyways. Maybe I can try something natural that actually has been a cure to so many.

Anyway, no friggin chemo for me. That’s the plan for now. Like I have said before, I will keep trying and trying until I find the magic combination that will make me completely healthy and cancer free.

Anyway, we all have our opinions. I respect everyone’s opinion, but only I get to decide what I do and no one else. It’s my life and my body so that means I am the head honcho. I call all the shots.

I’ll keep you all posted on how things go, but we have to give it time. Glasses up and let’s toast to health. AND to the LIONS!! Holy crap!! They won finally!!! Can you believe it!

Monday, September 21, 2009

Bras for a Cause - BIG SUCCESS

The First Annual Bras for a Cause Show Was a Complete Success.
Myself, Michael Radner, and Sarah Angelini.

We had Shutterbooth there. Here I am with my sister and brother in law right before I had to do my speech.
See in my hands is my speech rolled up.
I love this booth. It's so fun.
Think we'll have a photo booth next year too.

It’s funny when I think back to the day I walked into the executive director of Gilda’s Club’s office and introduced myself as a new member. I first mentioned that I would like to start a group for young women with breast cancer. Then I started to tell him about a fundraiser I would like to plan for them that I think would raise a lot of money. I knew at the time I was the only one who could see it the way I did. The amazing thing is, when I was up there on stage the night of Bras for a Cause, I realized the night was everything I had imagined in my head. And I'm a big dreamer too.

I remember saying confidently that I could sell 300 tickets to this show. We ended up selling 530 tickets. I also remember saying with confidence that I could raise $25,000 with this fundraiser. Once I started crunching numbers in my head I realized 25,000 was too easy of a target for me, so I doubled it. It’s after the show and I have crunched the numbers and we have raised $50,000. How amazing is that????? I need to have this kind of determination with being healthy, because I think a determined mind can accomplish anything.

I am so proud of myself, the committee, the models, my family and friends. It’s amazing planning fundraisers, because you meet so many people who are good deed doers. I met so many generous people willing to help. We had incredible programs, auction items, amazing art bras, models, vendors and great food. Everything was wonderful.

I was running around like crazy and hiding back stage with my uncle trying to get the nerve up to go on stage and thank everyone. I was so nervous going on stage that it started to interfere with my enjoyment of the night. My fingers went numb before I walked out there and I thought I was going to throw up. When I went out there I held my uncle in a hug and asked him to stay up there with me. That helped. Once I started talking everything was fine though and I was able to thank everyone appropriately. Then, afterwards I was able to take a deep breath out and enjoy the night.

Everyone said I didn't seem nervous on stage. I was actually fine once I was out there. Think the torture was getting ready to go out there and the anticipation.

Kevin bringing back our live auction art bras. "Bee Cups" and "Living Life to the Fullest"

We learned a lot this first year, but for a first year event I don’t think we could have done better. Our biggest shortcoming was that we sold way more tickets than expected and we didn’t have quite enough food for everyone. Please feel free to post as many comments as you would like on the blog and we'll take them all into consideration. Tell us what you liked and what we can improve on.

Here are some of the best compliments we got

“No first year event goes that smooth.” Manager of Royal Oak Music Theatre

“You know it’s a good event when the crazy people start buying tickets” Royal Oak Music Theatre’s box office

Other’s told me they haven’t felt that good in a long time and were truly inspired. That makes me feel so good, that we not only raised a ton of money, but we held an inspirational event.

Nancy Armstrong, myself and Alyson Thrift (3 Rack Pack and committee members) getting everything ready for the show at Royal Oak Music Theatre.

The marquee the day of the show.

The most important thing to me was that the models enjoyed themselves. They loved it. They loved being models and they loved the event and meeting each other. That was probably one of the most important things to me was that survivors enjoyed this event and it made them feel good. That’s what it’s all about for me. We deserve that day where we can just feel good about being a survivor and enjoy it with everyone.

Very soon I will be getting all the professional pictures my dad took of the night. Once I get those, I will post a photo album with all the pictures on the website.

Lastly, if you were a volunteer and have the pink lanyard we gave you, we are trying to collect them all back. Please contact me and we'll figure out a way to get them back.

Thank you everyone for your involvement in Bras for a Cause and for your support. I am truly so proud of all of us.

Lots of love


Thursday, September 3, 2009

Uh oh. We know what the pain was.

Well, I think we figured out what cause the pain that sent me to the emergency room in London. It was what I feared...progress in terms of the tumor on my liver. That one stupid tumor that was not responding to hormone therapy while the rest of them were keeping still or even shrinking. The liver tumor is growing. The ultrasound confirmed. Where it is growing there are a bunch of nerves, so something could have aggravated it and caused the pain. The pain has also come back. Not to the point where it hurts as bad as in London, but it hurts. I really don't care about the actual physical pain. I'd deal with the pain for the rest of my life if I could trade in what the pain meant. That's what's screwing with my mind.

My blood tumor markers are also going crazy which completes all the clues we are looking for to determine that my cancer is no longer idly sitting in my body, but starting to grow again. They went from 440 to about 880. Scary.

Of course I freaked out. Kevin was at the airport getting ready for a nice boys trip to Vegas with some Austin friends and I called him hysterical. Remind anyone of anything???? If you've read my blog back in the day you'll remember when I was re diagnosed, Kevin was on his way to the airport for a Vegas bachelor party and I called him to tell him the cancer spread all over my body and that they said I wouldn't live more than two years. Of course he skipped his trip and I forever felt guilty because he missed his Vegas bachelor party. So, this time I got my shit together and told him to GO and have fun. I should have just told him when he got back, but I can't help it, he's my emotional dumping ground and he plays the part well. He's always been there for me and I know he will always have my back no matter what. He keeps me sane for the rest of the world.

I feel for Kevin. This affects him almost as much as it affects me. I get so caught up in my own fear and sadness that I have no room left to feel sorry for him or worry about how he is feeling. Then, I get all the sympathy from everyone and Kevin I think comes up shorthanded. I can't imagine what this is like for him. I know he wants to make things better for me, but what can he do??? That has to be difficult to deal with.

Medically, what the hell am I going to do?????? Well, I am considering getting the ovaries out which is more effective hormone therapy than what I am currently doing. I manage no hormones pretty well, so I think it should be a pretty doable adjustment. However, now that things are looking a little worse, I have more to consider. I got a CT scan today and I get a PET scan tomorrow. What we're looking to see is if disease in other spots are progressing or just this one liver met. If it's just the one, we might consider RFA (ablation - sort of a surgery to remove the one non-hormone therapy tumor) If there are more spots then I think my doc is going to start speaking the dreaded word chemotherapy. I'm getting a little ahead of myself. We have two major tests to consider, but I've been down this road a few times and kind of know the plan. I pretty much know what my oncologist is going to say and suggest before we make an actual decision. We plan multiple courses of action for each possible way things turn out during every appointment, so we have a plan ahead of time. I'm just very resistant to the chemotherapy plan she always suggests.

Anyway, not a good day for me. I also have to stop getting tests done at Troy Beaumont. It's so close and convenient, but also the hospital my grandpa Joe died in. Every time I walk down that long hallway I remember the countless times I walked down there just hoping for a miracle. I walk past area D where I went up to his intensive care floor and I get immediately choked up. I remember my family hanging out in the lobby with my little sister trying to keep her occupied so she stops asking to see Pupa because it would be much too traumatic for a 4 year old. Honestly, I decided I will start making the drive out to Royal Oak for all appointments so I stop remembering that time. Guess it didn't help having that memory followed by the phone call to tell me my tumor marker results. It set me over.

Wow is this a depressing blog. Sorry. A girl's got to vent and Kevin's on his way to Vegas.
Here's the deal. I get bad news and I'm very traumatized and sad for one day. Usually by the next day I've gotten my head together and I can move on. That's usually when I write in the journal. So, today, you get traumatized, sad, scared Shannon rather than, day after already thinking positive Shannon.

It's a beautiful day and I'm going to do some gardening. Maybe that will take my mind off things. Or, I could just let Chloe keep sleeping on me and take a nap myself.

On a completely opposite note to try to end this happily...........
The Bras for a Cause show is coming along great. It's a welcomed distraction. Saturday September 12th. Come and see what we've worked so hard on for a year. I'll even get up on stage for 5 minutes to talk since I'm the president. I'd love for all you readers and supporters to come.

Check out some of these pictures we took of the planning committee for the program. They got funnier as we kept trying to get a good one. These are some of the people that are making this show happen. (as well as my uncle, my mom, my family and a lot more people as well)
This is your Bras for a Cause Planning Committee.

Then we broke into the art bra selection and all picked one to wear.
Kevin cracks me up. Never worried about his masculinity.
See, there's always something to smile about.
I promise I'll tell you all about the socialized health care in London and my experience in a blog soon. Might be after the bra show. And of course I'll tell you what the CT and PET scan says as well as what route we go to get me back to healthy. You all know I'm a trooper, so please don't worry too much. Things will be turning for the better in no time.

Your determined to be positive friend

darker pink dots