Friday, August 8, 2014

I'm all in double-down no fear.

Scott & I ready to check-in and yes, he wears pink for his wife.
My Gamma Knife (GK) day was just a few short days ago and today was my first real breakdown.  The combination of pain, pressure, nausea, fear, anticipation and tears finally exploded--for a minute I was thinking maybe I would keep a lid on the scream and cry until snot fills your mouth tears, the fits of shaking and ugly crying where you literally have to laugh at yourself because you don't know how else to stop the tears. Welcome to my evening. Luckily, the only one here to see me ugly cry is Lucy--and she knows better than to say anything. 

It is strange because somewhere in the back of my mind I have this fear that if I cry too much, or stress too much Lolli will get if all of a sudden I ugly cry and my head will explode. Ahh, the images you can create in the depths of your own mind.  That's the thing, it is in my mind. It isn't a tumor in my breast, it isn't in a bone, it is in my mother fucking brain....I still can't grasp it. I am not sure if I ever will, it is just too unreal, too abstract for me to wrap my thoughts around it. So I continue to transition from "I got this" to "how the hell did I get here."  It is a slippery slope. 

Lolli with "brain death" outlined, yellow will die and green could possibly

thin slicing of my brain MRI to help coordinate the Gamma Knife

thin slicing of Lolli via my MRI for perfection!

Recovery/treatment is no longer a cut and dry formula; just a few options and we hope they work, that is a strange type of limbo to be in. GK was much better than I expected.  The staff was incredible and my anesthesiologist was the best EVER. I was able to be put under general anesthesia and my family was able to come back, while I was under to take photos of me with the metal cage. The downside to this is they saw me very vulnerable and "asleep" with a breathing tube. The video is a mixture of laughter and tears--I wouldn't expect anything less.  The anesthesiologist had never had someone request that their family come to take photos with them while they were asleep.....he agreed it was okay, but insisted he took the tape off my eyes (then put it back on once they left) because that would make the photo "just too creepy."  In recovery I asked how my family did with photos and he told me they were "cry-babies and then pulled it together"--I truly did have a dream team. When I looked through the photos afterwards all I saw was Scott holding my hand....there I was unaware of anything and he was still right there, just in case. There aren't words for the feelings that image brings up in my heart, me so helpless and him right there smiling through tears because his wife is a nut job who wants photos of a metal cage on her head.......

always by my side.

come on in, general anesthesia for everyone!!

smiling through tears, me with a cage drilled into my skull--you thought your Monday was rough...

Tuesday begins the next steps in taking care of Lolli. There are drugs to figure out, infusions to have, seizures to avoid, ovaries to remove and a port to put back in. I am taking it 8 hours at a time. I keep the swelling at bay every 8 hours with steroids. I will then take it every 12 hours, then every 24. I am staying as in tune with my body as I can. I keep track of weird twinges, numbness, extra swelling, blurred vision, blah, blah, blah. I am trying to relax, trying to relish in the fact that I am here. 

Once again I find myself in a place of wonder.  The support and "dielollidie" cheerleaders are in my corner. I know that I alone don't have the strength I would need to keep this fight going. That without the love, strength, and support of others I would waiver. Instead I am held strong and rooted to all of you. From the core of who I am I want to say thank you. I couldn't imagine being on this journey alone, together I feel I have a chance...or at least the opportunity for one hell of a ride.

"You sip your water, I'll drink my beer."-Lee Brice

Saturday, August 2, 2014

lettin' the cat out of the bag, cancer in my brain.

meet Lolli, my brain tumor.
I have been waiting for something big to happen to kick my ass into gear to blog again....I guess I really should have thought that through. You know how I tend to go all in? I really should rethink that mantra, the whole balls - to - the - wall mentality....holy shit, I just thought about how crazy my life would be if I actually had balls....

But I don't have balls, I have lolli. Let me make the introduction for you. About 1am last Friday morning, one week ago, was my first introduction to lolli. I was minding my own business going to the bathroom when out of nowhere my right arm and leg began to seize and I couldn't control either of them. I was unable to tell up from down or what was the floor or ceiling. I was able to yell and wake up Scott and even with him helping me I couldn't figure out how to move my leg to walk. He sat me down on the floor and after 5 minutes or so it stopped. My right side was heavy and achy but I was able to get up and lay in bed. We discussed options and went to the trusted Google and I self-diagnosed myself with a mini - stroke,  which I could deal with later (I was exhausted). So I went to sleep.  It wasn't until the morning I realized how scary it was, my right side still was sore and weak so after some calls it was decided to head to the ER.  Before Scott was able to make it home it happened again...this time I knew I was in trouble.
We made it to our family at the ER and were so thankful to see the faces of our friends who have been through this shit pile with us. After tests and tears we were told there was no brain bleed, but there was a brain tumor...
another pic of Lolli

Yep, this 1 inch bitch named lolli in the left side of my brain sitting and putting pressure on motor function for the right side of my body (why I had the seizures). After a transfer to UW I met my team and got started wrapping my swollen brain around the news. There were large doses of anti-seizure meds and steroids and neurosurgeons and an incredible staff. After tons of work ups and planning I was able to be discharged Sunday night.
So, it has been one week. In one week I have been told, once again, my life is about to get more.....interesting? I don't know what else to call it... The cut and dry is that there is a fucking tumor in my brain. Cancer gave me cancer and it fucking sucks. We don't know if it was a cell that broke loose when all of this started 4 years ago and has been growing ever since, or if it is new. There isn't any way to know for sure, but what we do know is it is there and it is now in play. I now officially have metastatic disease, the last- (whatever length of life I have left)- long stage of breast cancer. Did I mention I am 30?!
So down the rabbit hole we go, a little different route,  but we stay the course and kick as much ass as possible in the process. My emotions and reactions have surprised me, I am still numb, but not overwhelmed.  I am living my life and going to soak up giggles, sarcasm, booze, sun, love and happiness. I need to feel sorry for myself like I need a tumor in my brain...

It is safe to say that right now isn't the end. It is also honest to say that it could be much closer than we ever would have thought. We have a plan. My tumor is a fit for a radiation procedure called Gamma Knife. Google it (it is freaky shit). It is also an amazingly accurate and targeted approach to shrinking the tumor. I will be going in Monday for the Gamma knife radiation surgery. I will have a barbaric (but lightweight) metal frame drilled into my head in 4 places. I will have another MRI and my neurosurgeon,  physicist,  radiation oncologist and anesthesiologist will be my team. The whole thing lasts 4 or so hours, including wait time. Mostly after the MRI the team gets together and creates the plan where 190-something radiation beams will all meet up to target just the tumor - saving the rest of my truly is remarkable.  This option also leaves further treatment open, I can do the Gamma Knife more than once if needed (versus full brain radiation which you can only do once and honestly is not an option I will consider for the future). Surgery isn't an option for me either,  where Lolli is, they would have to remove a good inch of my brain to remove her, doing much more harm than good. So... this is what we do. I am coming for ya Lolli, me and the Gamma knife!!! (see gamma knife images at end of post)

Post Monday I will have more swelling in my brain and increased risk of more seizures. I get to go home same day and recover which puts me a bit more at ease. The week or so after will be rough and we don't know how Lolli will react. There is a 10% chance she will actually get bigger and that changes things, this can happen months after the treatment. I will have another MRI a month from Monday to see how the swelling and tumor look.
the white around the tumor shows the swelling in my brain

August 12th I will be at Seattle Cancer Care to start another Hercepton infusion (a targeted chemo drug that I did a year of for my first round). The side effects are much less than a full battery of chemo cocktails and I actually managed it okay in the past. I will also be starting an oral chemo drug that has shown promising results in crossing the blood/brain barrier.  And last but not least I will get a shot to suppress my ovaries.  I will then be scheduled for surgery to have my ovaries removed--I get to keep my uterus....a memento of sorts for all my lady part bullshit. I just realized that read like I am keeping it in a jar HA, I get to keep it in my body...a safer and less complicated surgery.
So that is the just of it. Now I can begin my harsh and uncomfortable tumor jokes and random updates and Tweets. You know the deal, I say fuck a lot, I tell the truth, I try for a little grace under pressure. Welcome aboard, once again, to this rollercoaster. This one is going to be a nail biter for sure.

Tomorrow I buy new pillows.  A lady with a tumor in her brain should be able to sleep on a cloud.

this is the neurosurgeons drawing of Gamma Knife radiation while I was in the hospital--see how happy I am?!
This is the metal frame that will be put on and then also removed the same day, this Image is from: