First UCLA Appointments

I am exhausted. I was increasingly sick until I woke from my nap yesterday. The travel day was horrible, but who cares, I'm getting better and better!

Today I had my Dopa PET scan. Unfortunately, we blew out my vein on the first try so some of the radioactive liquid started burning horribly. The gentleman stopped and had to run back to the back room, the radioactive stuff can't be left out or it goes bad, so he had to switch it out, hurry back, poke my other arm, inject the new radioactive stuff and we were good to go. After the injection they had me lay down for 10 minutes while the dye moved through my body. Once in the scan, unfortunately, I had three coughing fits. It was uncontrollable, there was absolutely nothing I could do. Typically a cough will ruin the scan, but after reviewing the slides they said it was fine, which was FANTASTIC. I did not want to have to do another round of radioactive dye, or scan.

After the Dopa PET I had to literally run to another building because I was late for my pre-op physical. Every doctor, every technician, each receptionist and nurse - they were all incredibly kind, fun to be around, and they made my stressful, action packed day, as nice as it could be. The doctor checked me off and I'm good to go for a brain surgery. My general physician actually does rounds in the neurosurgery ICU on Fridays and he was excited to be able to check on me after my surgery he said with a sweet smile, "I will be doing rounds, and I'll come check on you. Of course, that is, IF you end up having to do the surgery." He knew that we were waiting on the Dopa PET scan results.

After the physical I went down several floors to the lab to get blood work done, the third needle of the day....rats. A little pee in a cup and I was off to another building for a lung x-ray - a formality. After that Dad and I went down to the film department to get copies of my Dopa PET. Within 20 minutes we had three copies of my scan. We have already reviewed it, and although we really don't know what we're doing, it's nice to see what the doctors are looking at.

There are several different scans of my brain, one does not light up ANYWHERE. There is another one that does, right in Hermie's house. I'm not going to make any snap judgements, but it looks like there is active tumor. At this point we are expecting to go through with the brain surgery. Bummer. We'll wait for an official nod from Dr Liau, but I'm mentally preparing myself for the knife.

Tomorrow Dad and I have to run to the hospital to get more medical records, and contact UW to send more medical records to UCLA. The details are never ending, you have to be on top of your game. You have to schedule so much of your own appointments, and you have to get all of the medical records, this is a very interactive situation. I wish I could just show up to appointments and have it all figured out, but oh well.

Off to bed.

If you look closely at the pen you can see a person laying on a bed, and when you turn the pen, the bed floats into the machine. Just a little gift from the Dopa PET scan department. A parting gift for subjecting yourself to radioactive fluid? :)

Possible Exclusion

When I can't sleep, I read about the success of my chosen treatments. Whether it's the results of the current dendritic cell therapy trials at UCLA (around the US, or even the globe), or the supplements and how they selectively induce apoptosis in glioma cells. When I'm afraid, I read. Last night, while trying to get more information, I stumbled upon the Exclusion Criteria for my clinical trial and right up there, first on the list, #1.......Subjects with an active infection.

AAAAAH!!!

My temperature is gone, my throat still hurts but it's getting better. I have been sitting on my bum or sleeping. This is so frustrating! The whole point of this trial is to train your immune system to attack the tumor. If my immune system is down the vaccine will not be as effective, perhaps not effective at all. I understand the exclusion, and that means I have to get my act together. Looks like I'll be laying low. I even asked Dan to pick me up a face mask for my flight. Yep, I'm going to be one of those weirdos that will be wearing a sickie mask, the bird flu kind, it's ridiculous. Oh well. Gotta do what you gotta do.

I'm sorry if I'm not returning very many texts, emails or phone calls. It's not that I don't think about all of my amazing friends - I do! All the time. It's one of the things that keeps me going, remembering all of the laughter, and fabulous ridiculousness of my life. But, it's true what they say, when you're fighting a beast like cancer you have to focus your priorities, and although I wish it wasn't the case, I have to focus all of my energy on resting and preparing for my trip. I'd rather be running the lake, going to dinner, or having a glass of wine with my girlfriends. Actually, I'd probably rather be doing ANYTHING other than preparing for another brain surgery. I can't think of much I would like to do less than a brain surgery. I only have so much energy at a given time, especially when a treatment is around the corner. I imagine it's like being a mother of young children. Your children have immediate needs and they can't take care of themselves. That's like cancer. All of a sudden, at times, everything else in your life falls by the wayside. I'm sorry that I'm not a very good friend right now. I hope that you can forgive me. I read all of my emails, text messages, etc., and I appreciate them so much, I just might not be able to respond.

On Tuesday, I got a copy of the only photo we have of Dan and I at Dallas & Kelley's wedding in Chicago. I think I'm so nervous to see what I actually look like in full shots that I've stopped taking them. I need to get over myself. It probably sounds weird, but I feel happy and healthy and I don't want to be analyzing my appearance, which I tend to do. Sorry it's a little bit blurry, Jen's daughter Kai took it :) I find it absurd that I can get caught up in such trivial things when deep in my soul I know I have a serious issue. I'm a contradiction of survival and vanity. It's confusing and embarrassing at the same time. How can a girl who has her life on the line be concerned about her looks, about material things, surface stuff, or image. I'm an anomaly to myself. I guess, in the midst of all the craziness, I still want to be a woman who's attractive and put together. To look as good as I feel.

I'm juggling a lot of things emotionally, physically, even spiritually. It's weird to ride the waves of cancer. One fabulous note that I realized I haven't shared, is that after April's MRI, my parents sent a copy of every single MRI to an independent radiology reading center. They did not get any extra information. They did not get my pathology or diagnosis. They didn't know the names of my doctors, or the treatment that they were recommending. My parents did it behind my back and just recently told me the result. The specialist who reviewed all of my MRIs said that my tumor has not grown.

I'm not sure what the deal is with the University of Washington and their radiology department. Do you remember when I talked to my doctor about how my radiology reports from the MRI readers stated that the tumor had not grown, yet my doctor and the nurse were trying to prove to me by measuring the tumor at my appointment to convince me to do radiation? What the heck?!? Or what the HELL is more appropriate. Please beware of my story. I have the top radiation oncologist at the UW who also teaches at the college and works at Seattle Cancer Care Alliance. I have no idea why there would be a discrepancy between those who read my MRIs and my doctor, but something is very fishy. I'm just grateful that I did not listen to my doctor. My brain would have been long fried and who knows how badly that would have turned out. I'm not necessarily against doing radiation but I would want to do it as a last resort. If my protocol is working, why beat a sleeping monster with a sledgehammer. Just tranquilize it.

So far, from October to April I was able to stop the growth of the tumor. I skipped the MRI in July due to the attack, so six months will have passed when I have my MRI on 10/15/12. Hopefully, I've been able to continue the trend, maybe even reversed it some. Anyway, I just wanted to share that information about the MRI readings. It is so important to analyze the information. It is imperative to get copies of all of your reports and look at them yourself. And if something doesn't sit right, pay the extra money and get an independent review. The worst case scenario is that you might be wrong. That you should do what your doctor is telling you. That you might be back at step one and out a little bit of money. But so what. At least you'll know that you checked your bases. Be strong, and follow your gut. Take whatever little energy you have and put it toward advocating for yourself. Don't just follow the cattle chute. You are the only one who can find the best cure for your body. There are so many successful treatments and there is no doctor in the world versed in all of the options. Be your own general manager, please don't be afraid of taking charge, and sometimes that means giving leniency to those on your team. Back in April I told my parents that they could solicit reviews of my case from other sources, I just didn't know that they were going to go through with it :) 

Thanks mom & dad for doing that review behind my back. If you have someone who can take the hits for you, double check things, etc. it's nice to not have to field the blows all the time. If the news was bad I would never have to know, but since it was positive it ended up being a gift. They knew that I wasn't going to do radiation anyway at this point so they felt no need to stress me out or fire me up right away. They waited for the right moment, once my mom had a martini in her :) She and I are open books that way. So there you go. A huge blog today, I guess I had a lot on my plate and it feels good to get it out. I fly out on Monday, and on Tuesday morning I have my Dopa PET scan to make sure that I actually have tumor tissue not just scar tissue. Let hope for a miracle! I probably won't know the results until the 16th. Of course, I'll let you know as soon as I can. Love to you all!