I Made the Team

Well I finally heard back from the doctor in Maryland. (there was a slight delay because of the storm)I have qualified for the immunotherapy trial. So to make a long story short the idea of the clinical trial is that they remove a cancer tumor and grow the t-cells (these are like tumor fighting cells) Once the cells are grown you are given chemo to suppress your immune system. Following chemo you are given your cells and interluekin-2 (this kind of puts your t-cells on steroids). If everything works out perfectly these T-cells attack the cancerous tumors and and ideally prevents future cancer growth. Its pretty similar to the way a bone marrow transplant would work.
So what are the downfalls of this clinical trial? Like any kind of medication or medical treatment there are side effects. The first one is the risk of infection during the chemo. The doctor said that just about everyone gets a fever and ends up on antibiotics. This is obviously a bigger deal for someone on chemo that is unable to fight off the infection. Another problem is the interluekin-2, come to find although this drug does great things it also does horrible things.The doctor said that although the protocol allows for 11-12 doses of the interleukin-2 no one gets that many. He said they give the medication until the patient starts experiencing the side effect. ex) difficulty breathing, kidney failure, pulmonary edema, low blood pressure. The good news is all these side effects are reversible. Its just kind of scary to think that this medication sends people to the ICU. The other bad news is that they wont be able to start the transfusions until the middle of January so that leaves another 2 1/2 months with no treatment.
So in my situation the doctor is planning on surgically removing the cancerous nodes from my neck. Those will be used to grow the t-cells. The tumor on my spleen will be used to monitor and measure if the immunotherapy protocol is effective.
So far there has been 4 people who have done this clinical trial 1.) a female with cervical cancer who showed no response to treatment. 2.) a female with cervical cancer whose first 2 scans showed reduce in tumor size but is now showing suspicion for tumor progression. 3.) a female with cervical cancer, this one is fairly recent but the first scan showed dramatic tumor regression. 4.) a male with a neck tumor that is also fairly new and has shown tumor regression after the first scan.
So now I'm back to waiting until I hear from the nurses that will schedule me for clinic and surgery will hopefully be able to be done in the same visit.

Hawaii sun is good for the soul

Well its been awhile since I have posted anything. So lets start with the good stuff. Jim and I were very fortunate and have some friends of the family that offered us their condo to stay in. Their condo was in Waikiki Beach in Oahu. We had an amazing time while we were there. For those that have never been to Hawaii I think its safe to say that Hawaii is a different way of life. Except when it comes to the bums they still hang out outside of he McDonald's. In general though its a life that is lived outside in Hawaii. The weather is amazing and there is just so many things that you can do. The unforgettable moments for me was 1. Hiking diamond head. It was a challenge for me because I am not even close to the shape I use to be. We had to take frequent breaks but I made it and the views from the top were unforgettable. 2.Snorkeling at hanauma bay. Another amazing thing that we did. I have never really done snorkeling before outside of doing it in the pool as a kid. Snorkeling in the bay is way cool. The fish are so colorful and come right up to you. We were also privileged enough to swim with a turtle. I must say that my husband totally nerded out with the snorkeling. So much so that he decided to skip the sunscreen on his back. Don't worry though its been over a week and he still remembers that he should have listened to me and put on sunscreen. After the bay we also went para sailing that day. Also a ton of fun. I'm not crazy enthusiastic when it comes to heights and there was a few times that I got nervous but it was still something amazing to do with my husband. Another unforgettable thing was Pearl Harbor. Just trying to grasp what was going on the world at the time is difficult. The last day was also very memorable. We rented a car and went around to the north shore stopping at all the famous beaches (banzai pipeline) and ate at the famous Giovanni's shrimp truck. For Jim and I it was a really relaxing day to be on our own time schedule and not waiting for the bus. The north shore was a little more relaxed and not nearly as busy. A very relaxing day.
      So I know everyone is dying to know whats going on with my recent scan. I was suppose to have my scan on Wednesday but the machine was broke so I was rescheduled for Thursday at their sister facility.  I tried to get the CD after the appointment so I could overnight it to Maryland but there was some problems and they couldn't get it to upload. So we picked it up on Friday and it was set to deliver on Monday. I called this morning to see if they got the CD and get their opinion but unfortunately due to the storm they were closed but they hope to reopen tomorrow. So more waiting....   I hate waiting though so i called and got the official read from the radiologist. In comparing the recent CT with the previous PET some lymph nodes have gotten bigger and some have gotten smaller. The other good news is that the radiologist that read my scan believes that the spot on the lungs might be old infection changes and may not be a metastasis. If that is the case not having the lungs involved increases my prognosis pretty significantly. I actually started crying when I read the results today  but they were tears of joy. I know this scan is not perfect but after so much anxiety with the anticipation I was so relieved to get the results that I did. So for now I am waiting to hear back from Maryland to see if the tumors on the spleen are good enough for them.

Are tattoos taboo?

First off I would like to say that I don't care what anyone thinks of my tattoo. I love it. My sister, my mom, and my 2 best friends all went and got one. Everyone got theirs on their wrist but I got mine on my stomach. 4 of us were even tattoo virgins.
I would like to say that I did not ask anyone or pull the "but I have cancer" card. (The only good thing about having cancer is being able to say that.)They all wanted to do and did it on their free will. I would also like to say that I love all of them and appreciate everything they do to support me.
My tattoo has a heart which symbolizes love, doves which symbolize hope, little stick people which symbolize friends and family, and the word faith. My tattoo represents that when you fight cancer you need to have faith, hope, love, and friends.
I always knew I had a great support system. Tattoos are forever and so is my support. We had a lot of laughs that day and its memories that we will look back at 20 years from now and still smile. They reminded me that day that I am not fighting this alone. They are fighting it with me.
And for everyone that wants to know how I am doing. Today is day 7 of the 10 day cleanse. For those that want to know we are doing the modern manna 10 day detox. I'm lucky that my husband is doing this with me. Did I mention that I have an amazingly supportive husband? The first few days were difficult. Not because I was hungry but because I was so full from all the fluids that I had to drink. On day 4 we had to add a blood detox into the schedule. Since adding the blood detox I have gotten pretty sick every evening around 5. They say that when you detox you can have a "cleansing crisis" which is exactly how I felt. Jim hasn't gotten sick at all but he also hasn't had cancer or chemo before. So hopefully this feeling is because its working and making me better. My scan has been scheduled for October 24th so we should know them.