Sunday, October 19, 2008
Please take a moment on Monday to send a special healing thought to my Friend Billy who is having surgery. Light a candle or just think of something really lovely.
I met Billy at Kripalu for a Crazy Sexy Canser Bootcamp. He has become a good friend to me and I know the support we give one another can help get us through these tough times.
I feel blessed to have met so many wonderful people on this journey. Having a stupid thing like Canser in common is funny. But, It is nice to know that we are not alone. I believe with the help from others and others friends ( you guys), the power of prayer and thought can really help.
So take moment in your busy day and think really hard about a great guy who has to go through another struggle to live a long life. Send positive bright energy in a good thought.
Friday, October 17, 2008
Happy Fall and Big Chair Festival Time!
I am getting to know my doctors so well that I know what they are going to say even before they say it. It's that slight pause or leg movement. I decided to just ask the hard questions. Like for instance, instead of asking, "Why do these tumors keep growing?". I say, " So this is going to kill me if I don't get it under control & nothing in this hospital seems to be helping & this drug you want me to take may or may not work & really I am up shit's creek?" These are my really, really long run on sentences that constantly play over and over in my lumpy tumor head.
I went in today to see Dr. M who wants me to start on this new pill called Brivanib ( look it up folks) that may help. It's better than doing a full blown body aching chemotherapy. Paul is excited because it gives me another option. I am pretending to be excited, oh yippee more drugs. Let me put it this way, there are 49 side effects. I am not talking your usual slight fever & achy belly. It's a trial, so I would go into the city once a week for 6 weeks and then continue getting tested for another 6 weeks. This is going to be fun.
The one decision that I did make is a good one. Plan A is to continue to do my vaccine and head down to the sunny Bahama's on Sunday the 26th to start an immune therapy that will help get my vaccine to work better. This is my plan. And up until a couple of hours ago I was very happy doing this. Now Plan B consists of me doing my vaccine and starting this Brivanib clinical study drug that may or may not help.
Anyone have a Plan C for me? And please let it involve a Vespa (italian motor bike), a cape and Tiara. Thank Gail for that visual.
Peace & Health
Friday, October 10, 2008
I woke up yesterday thinking I just had 1 more morning, 1 more afternoon, 1 more evening to stay busy before I got the call from Dr. Doom. I got dressed, put on some fluffy black mascara and the phone rang. As the Mascara poured down my face I heard what I already new.
Both lymph nodes tested positive for Spindle cell neoplasm.....Blah, Blah, Blah...CanSer.
What will the future hold? What am I going to do?
Live, Laugh and Fight. I am not sure which treatment direction I will follow, but one thing is for sure...I am going to try them all.
That 's all the news I have now.
I will keep my Support Rock Stars posted!
Thursday, October 9, 2008
I am angry so I decided to type this in red.
I have the negative feeling in the pit of my stomach. Usually when I am waiting for test results I think positive and can't sit still. I do yoga, shop for shoes (retail therapy), eat everything in sight. For two days I have been enjoying the quiet time, meditating. I just cant stop thinking about what's going to happen next. The truth is I was always scared about surgery, and treatments. Right now I am absolutely petrified. I am realizing that I may not have control of this canSer. I control pretty much everything I do, just not this. I look & feel amazing. I had my "Big" surgery less than a year ago and I think about how far I have come. I am so proud of myself for staying positive, eating right and living it up. And, just as I am feeling better, getting my life back...I get pushed down again. What I don't understand is , what am I doing wrong? I know it's the question all of us canSer buddies would love to know. The real question is why, oh why are my white cells sleeping? I need to get a really loud obnoxious alarm clock to wake there lazy butt's up.
I had a wonderful weekend in the Berkshires of Massachusetts. The mountains and colors from the change of season was just breathtaking. I woke up early, did yoga, had great meals and met wonderful friends. I was able to spend some great alone time with my sister in law. We drove up friday to Kripalu to meet up with a group of about 60 other amazing people dealing with or supporting someone with Canser. We healed one another, shared stories, cried, laughed and Hula Hooped!
I felt supported and understood. My scars were excepted here. I found my "People". To be very honest I felt blessed. Seeing some struggle with the effects of chemo, another surgery, etc.....I was happy that I moved passed it.
But, now I wait. And I do know what Dr Tumor is going to say. And I am not sure if I really want to hear it. Because all I heard him saying as he demonstrated the surgery he was preparing me for next was..." YOUR NEVER, Ever going to have children!"
So Now I am sitting here Doe eyed waiting for the phone to ring. The problem is they are not suppose to call until tomorrow.
I think I will Hula my fears away!
My Crazy Sexy CanSer Cowgirl-Boy Group!
Wednesday, October 1, 2008
Hi Everyone... I really wanted to share this amazing place with everyone I know. Two months ago I had a tumor (sarcoma) removed from my head and I had it mailed down to a clinic for them to make me a Vaccine. There are a few ways to make vaccines..urine, blood, tumors. As much as I hated having another tumor, I was happy to give it a new home. Sending it to the clinic was the best thing I have ever done. I had a follow up with my Dr's at Sloane (sarcoma specialist) and Radiologist about there thoughts. The plan was to do more radiation on my head, lymph nodes and neck. More Radiation, I don't think so Doc. I asked my Doctor a simple question...what can this Hospital offer me besides more Radiation & Surgery. His Answer, "Nothing" That made my decision even easier . We were heading to the Bahamas. So, three weeks ago Paul and I went down to meet Dr. Clement and discuss the game plan. Using my tumor they were able to make a vaccine from the antigens in my body. Twice a week I would be giving myself these injections into my groin, stomach and arm. This routine would continue for 12 weeks. These injections are to get my white cells to recognize cancer cells and kill the suckers. There are no side affects to this vaccine. We heard the most amazing stories from other patients and could hear the gratitude that they had to this clinic. The Dr's and staff were amazing. I felt so comfortable & thrilled about my decision. Everyone is different. Give a call down there...tell them your story and see how they can help. Here is all the information. Please pass it along. ITL Clinic Grand Bahama Island Dr Clement phone 1(242) 352-7455