Tomorrow! Tomorrow! I Love Ya! Tomorrow!

I'm channelling the only Annie that is real to me, the movie, the Annie of my youth...

Yesterday was plain awful... you can say that again... yesterday was plain awful... but that's... not now... that's then!

Hello friends of Cancercopia! I must admit I wasn't completely honest with you yesterday because I knew people would be worried but I didn't want them to be unglued like we were. The truth is, the area of tumors collecting on my liver is 9 cm x 9 cm. I wasn't more specific about the nines because I was protecting you. Don't look at a ruler people! It will only upset you. This is a larger than a baseball and smaller than a grapefruit, but Richard says it's a perfect circle target for the cancer killing shit that comes next. It's all about visualization, right?


Today we traveled to Moffitt Cancer Center in Tampa to meet Dr. Susan Minton. She is notoriously late because she takes so much time with her patients and our 1pm appointment happened after 3pm, but since this was our first visit, I won't hate. She was a pure delight. She was thoughtful, informative and thorough-and she's a hugger, so we love that.


The day ahead was daunting for me. My previous excitement gave way to dread as I wondered what would happen to my potential arsenal if I were turned away for a clinical trial. I had put all of my eggs in the Moffitt basket and I was worried.


We picked Christy up on the way to Tampa and arrived around 12:15pm. Complimentary valet parking for everyone. Nice. Beautiful facility. Nice. Friendly, helpful woman at the reception desk called me honey and darlin in a genuine, non-condescending way. Nice. Got called back right away by the admissions folks. Very nice. Then the wait.


The wait really would not have been that bad if it weren't for a certain couple that joined us in the waiting room. They interrupted us talking to a lovely man by the name of Max that was waiting for his wife who was getting a mammogram. Stephanie and Mark were their names. They are sweet, well meaning folk. They didn't mean no harm. But my worry and waiting got the best of me and I just wanted to punch them both in the face. Many times.

Stephanie is also Stage IV and has been in treatment since 2004. She talked to me all about how to be in ongoing chemo treatment (thanks helpy!) and told me to keep my chin up and I would be ok. We learned that she is on bi-polar meds and Mark is an alcoholic that doesn't work. He also eats when he's worried so he's gained a lot of weight while his wife is on treatment. We learned way too many details of their life at a high volume so everyone could hear. We learned about their dog and cat and their unnatural love for Star Wars. She presented herself as a science fiction writer (although currently unpublished) and explained to me the differences between the atmosphere on Mars vs. the atmosphere on Earth. The amazing thing is that I don't think either of them took a breath in over an hour-and I am not exaggerating. Just because she is my cancer sister does not mean she wasn't damn annoying. When they finally called my name, it was like winning the waiting room lotto!


In the examination room Tarina took my vitals. A substitue nurse said hello and asked questions (usual nurse was on vacation). Then we waited... and waited... my theory that if you mess with something in the room, they'll come in was disproven several times over. I took out 4 of my original mammogram xrays and lit up the xray viewing thingy and we studied the insides of my breast for quite some time. Nothing. There was a computer in the room and I found a website to play solitaire. I did consider doing a Facebook posting, but big brother would have found me out. So I'm using the computer in the examination room, wearing the drafty gown with my breast falling out of one side (Christy is still mesmerized by my breasts, I'm sure) and waiting for over another hour. Nothing. Christy went on a hallway quest for the doctor. Nothing. Then finally, there she was! Dr. Minton.


Dr. Minton had a medical resident following her around and watching. She was talking abstractly about this clinical trial and that clinical trial. She went over my history of the treatments I had already tried. She agreed that Dr. Shah had been doing the best, most cutting edge treatments for me and that I was in good hands at MD Anderson. She was talking to us as she was going through her own thoughts. What kept her from being excited and throwing me in a clinical trial right away, was yesterday's magical numbers: 9 cm x 9 cm. She thought this was an extraordinarily large area on my liver and that made her nervous. The Doxil chemo should work very well for you, she said and if the tumors shrink we can put you on a clinical trial later. I could almost feel the hope draining from my body.


Then Dr. Minton was paged and left the room.


Well, while she was gone, she obviously took a closer look at last week's scan results. Ah--it was not one big tumor, but many smaller tumors gathering together to make such a large mass. Remember Cletus and his friends like to party together. This seemed to change everything! The tumors grew together and not apart in all different directions with new offshoots at every turn. She re-entered the room, sans medical resident, with new excitement. She said she went ahead and put me on the list for the AKT clinical trial and if I qualified, the person in charge of clinical trials would call me next week. Since I have to be off of chemo for 4 weeks for clinical trial data, I would not start the trial until 2 weeks from now (break!) Right now it's about 90% that I will get on this clinical trial and we all wept with excitement, Richard, Christy, Susan (we're tight now) and I held hands and danced in a circle around my mammogram xrays. Ok, maybe that just happened in my mind but that's what it sure felt like.


Details:
This is a dual agent clinical trial. It is a drug (oral pill I can take in Orlando) that combines with Herceptin (IV every 3 weeks) to break up the DNA of the cancer cells in my body and the cancer cells then die. Here is the best part: it is not chemotherapy! Side effects would be minimal and I would keep my hair. If I can get the tumors on my liver to shrink without chemo (the future of cancer treatment, my friends) and they shrink down to a much smaller size, then perhaps we will radiate the tumors or blast them out with radio waves or some other cutting edge awesomeness. This is excellent!


Cons:
This is not chemo. The tumors may be resistent. Also, the meds I am currently on to keep tumors from going into my brain would have to go away. But really, would God let that happen to me again? I think not. Driving back and forth to Tampa, inconvenient but totally doable. Side effects would be an annoying, itchy awful rash for a week or two but then my body will get used to it and it will go away. Steroid cream will not help. It's as if my previous experience with bedbugs at a swanky Orlando hotel had prepared me for this moment. This is not a drill!


Pros:
This is not chemo. Quality of life and energy would improve. After the start of the trial, they will scan me as early as 6 weeks into it. During these CT scans I will not have to drink the nasty contrast because the IV contrast will suffice to show the liver. Is that the hallelujiah chorus I hear in the distance? If the scan shows that it's not working, then I will be taken off of the trial and put on the chemo called Doxil as originally planned. Because I look so healthy and my body parts function well and my liver feels normal and functions normally, she said it was worth a shot. If I had any pain or symptoms of any kind, it would be a no go. And the best part--early data from this combo of drugs is very promising for shrinking cancer without chemo!


And the number one reason we love Dr. Minton: She uses the word remission! As in "if this combo of meds puts you in remission" or "once you are in remission" and I said "wait! my doctor in Orlando doesn't like to use the word remission since the cancer is always there, even if it's inactive." And Dr. Minton scoffed and said "inactive cancer is remission! It's a lovely word and I think we should use it." And I agreed and all was right with the world.

So, please think good thoughts that the 10% won't sneak in and kick me off the clinical trial. Either way though, everyone is optimistic that either the trial or the Doxil will work and kick these tumors' butts. I now have two official doctors that are working together in my best interest and the power of two award winning, cutting edge cancer facilities in my arsenal. Cancer better step aside or feel our wrath, bitches!


Rock on my lovelies! Keep praying and hoping and supporting. I love you so much for it. Tomorrow... tomorrow... you're only a day away.....