Friday, May 27, 2011

Perception or I should be happy but...

Ok so on April 25th I had another Brain MRI and Cat Scan. I got the results two days later and it turns out the masses didn't shrink any more since the March 9th scans (except for the liver mass, that one went down a smidge, go liver!) Now to give you perspective, with the exception of the one in the brain that bled in March. they are all measuring in the millimeters (the bleeding met is about 1 cm). So they are all really tiny, but they are still cancer and are still inside me so I still hate them millimeters or not! ;)

So the doctor says looks like chemo has done as much as it can to shrink them, now we must turn our attention to the the brain mets because it turns out your blood clot isn't gone after all. So Brain Radiation is scheduled and the reasoning is that we can kill the blood vessels around the brain mets and make it safe for me to take blood thinners again. So truth be told, I wasn't happy with this news initially. I really wanted to hear that the masses were still shrinking and a couple had even disappeared. I didn't like hearing "no change" from March 9th. I also REALLY didn't like hearing that the blood clot is still there. Grrr! So my next apt. with Dr. Krug is set for the end of June (when I'll have another round of scans) and Radiation starts mid-May. But that is out of Krug's hands and in the hands of the radiation oncologist at the main hospital. So I'd have a two month break from Dr. Krug's office. And finally my remaining two rounds of chemo were cancelled which none of us were happy about.

Now we have to be the only people in history bummed about not getting chemo. But you know it takes a lot to psych yourself up for it and when you are ready for chemo you are READY for chemo. So it was an odd day for me. And I bitched and bitched in the waiting room to my family about how pissed off I was. I feel bad about it now, but at the time I just needed to vent. Plus I needed to work it all out in my head and get some handle on what I was just told. Esp. since Dr. Krug seemed happy and yet the news he was telling me was registering in my head as a bit of a negative.

But here's the deal...

What Dr. Krug meant was "Wow, we've seen a lot of shrinkage in these last few months, you're responding beautifully. Chemo is no longer working right now so let's pause it for a while, but that's ok, cause it can work again in the future and we've got Tarceva on our side (the pill I take every night) and that works great. Tarceva not only will keep the masses in check, there's even a chance it can kill some of the smaller masses. So now we can kill those brain mets and focus on the blood clot. But you're doing well and radiation is a piece of cake after what you've been through these last few months."

Now the reason I know that's what he meant is because this is how it was told to me by my radiation oncologist, Dr. Chan. You see Dr. Krug is a good guy, I really like him. But he's MAJORLY geeky, very scientific. Now in terms of fighting my cancer, I like that. But in terms of giving me news, he's not too great. Only in the sense that he is bad at conveying tone (not information, he's ok with that). Like he was SO confused why we weren't happy with what he was telling us. But had he came at me like Dr. Chan did I would totally have reacted differently.

Now while I waited to meet Dr. Chan and got this lovely perspective, I had some time to think. And I decided a couple of things. For one I have an archaic perspective of cancer. I just want this shit out of me and for the most part stage 4 cancer is now more of a chronic illness than a death sentence that it used to be considered. (And in the interest of honesty, when I first got the news from Sloan back in Jan, the word terminal did jump around in my head a bit.) So I do have to wrap my mind around that fact. Plus look having a lower stage is no guarantee that you will be cancer free forever. I know plenty of stories of people who had stage 1 cancer and then years later it came back and spread like mine did. So getting it all out of me, as much as I would like that, really doesn't guarantee a damn thing.

Also I had to remember this is only 4 months in. I knew I'd be fighting for months and years why did I think I could beat this in a couple of months? How arrogant is that? Plus, I realized that I was losing my faith, my faith that anything is possible and yeah maybe there is a miracle waiting for me. And finally I decided to use the time I was given, April 27 to May 17 (the time between Dr. Krug and Dr. Chan), to regroup. So for one thing I enjoyed feeling like myself as the chemo worked it's way out of me and ultimately enjoy myself while I waited for radiation to begin. And I decided to start reading about other things I can do myself to fight my cancer. Educate myself and then show up to the June 29 appointment with Dr. Krug armed with questions.

So we've read a bit about using celebrex along with Tarceva because there's evidence that it can boost Tarceva's effectiveness. I'm also reading The Cancer Battle Plan (which I read about from Crazy, Sexy, Cancer Tips) which is about diet and shoring up your immune system and liver to help in the cancer fight. Now what I like about these books is that they make no promises. They aren't selling you any snake oil, I'll get more into this in another blog, cause it would require me to turn my diet life upside down! Which for me will be damn hard. But again, for another time...

So after a couple of days of working it all out in my head, I felt better and I went into May feeling good. I did all kinds of shit, crafts, cleaning, I went to Chelsea Playground with Sophia and climbed like a monkey with my daughter throughout the giant thingamagig, which for a fat chick like me was crazy impressive.

I've been playing Uno on the iPad like it's going out of style and acting a bit more like myself. I had the famiglia over for Mother's day, which we did a big ole crazy brunch fest that my brother-in-law, sister-in-law and we catered from Pathmark, it was pretty cool. The pound cake was to die for! And then we had a little family pizza party for Soph for her 3rd birthday. It was awesome entertaining and having a house full of people I love. I wish my house was bigger I would have had more people!!!

So then May 17th arrived and I met with the radiation team for the first time. And they really helped me gear up for the fight for my brain. So, where am I right now? Feeling good, just a tad tired, but I feel like I'm in warrior mode again. And I'm still attacking my to-do lists, just taking a nap here and there. And I have to go off of Tarceva while I'm on radiation because of the skin irritation caused by Tarceva, so you know what that means? I can eat all fucking day, woohoo!!! No 3 hour block of no food every night.

Fat girl happy, very happy!

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