Sunday, February 24, 2013

picking up my pieces.

I haven't blogged in a little bit, life simply got in the way. And by life, I mean someone took my life, shook the shit out of it, flipped it upside down, spun it around and shook it again.

February 14th my beloved, most amazing mother took her last breath, with my dad holding her hand.

It still feels very strange to say that my mom has died.

Allow me to fast forward a little bit...

On January 30, to the 4th of February, Blake and I took the kids on a top secret trip to Disneyland  The spontaneity that spurred the trip was Brinley's pending relapse. We wanted to get away and escape before being tossed into another 2 year boxing match with the ugly cancer beast. So we high tailed it out of Arizona. The proper arrangements were made, we had a good friend watch the house and dogs, and secretly packed their bags while the kids were in school.  Brinley originally thought we were going to the hospital in the city, and because she understands that her cancer is coming back, this is not an "out of the ordinary" request.  Once we had them settled in the car and about 45 minutes out of the city, both kids glance up from their iPads and say, "uhhh where are we?" To which we pull over and announce "SURPRISE! We're not going to the hospital! We're taking a family vacation to Disneyland" which is followed by ...silence. Carter is processing, and Brinley doesn't believe us. Do we really trick our kids that often?  As the reality sinks in, Carter began to bounce up and down laughing....while Brinley is left standing there saying, "noooo....noooo...we're not going...are we? for real? Nooo you're trickin' me again".

About 15 min down the road she squeals with delight, "THANK YOU MOMMY AND DADDY". There it's all sunk in, we're all happy, and now we have to try our best and cope with, "when are we going to be there?" every 5 minutes for 6 hours.

We spent 3 amazing fun packed days in Disney. We were able to cut lines due to Brinley's cancer, it allowed her to have a "guest assistance" pass....just a fancy VIP ticket. No 3 hour wait for the "cars" ride, 15 minutes and we're in!

Disney was was needed.

Sunday before we got on the road I figured I would call my dad to check in, Saturday he had mentioned that they had done a CT scan on mom, and I was anxious to find out the results.  The results weren't good, something had happened and there was significant shadows showing up on her brain. Later that night after I had gotten home, I had found out that mom had 3 major strokes. Not good.

Monday as part of our routine for the last 2 months I call dad for our morning skype and coffee session. He's been at the hospital since 3am, mom had a heart attack.

A few hours later mom's doctor had called to tell me that with the blood clots in her head, and heart, mom's lungs are flowing filling with fluid, she will not survive this. It could be hours, at most a day or two, but the amount of damage done to her body is un-repairable.  I took the news as matter of fact, and as the conversation with her doctor began to come to an end my voice started to crack, my mom would indeed die and leave me, and at the risk of sounding cliche...I wasn't ready, I wanted more time, I still needed her.

She died early Thursday morning.

It goes without saying that my mom meant the world to me. She was my crutch, and my "just because" phone call. To have it all pulled away from me feels like a cruel joke, simply saying I miss her, doesn't seem to cover the layers of grief I have right now. At times I'm angry because I just want my mom, I need to hear to her voice and I can't. I'm angry because I feel that she was cheated out of a long(er) life, and she deserved to have a beautiful long life. There are times where I cry so hard that I'm sure I will never stop. I just want to stop feeling so sad, and it's frustrating because I don't think that will happen for a while.  I also have become an expert at protecting my dad and his feelings. I know he's heartbroken, but I'm so afraid to show him that I am too. I feel this need to be brave for him, to set my own grief aside and help him figure out life without her. Because when I cry, he cries, and then I feel bad for making him cry so I swallow the lump in my throat and force a smile.

The worst is the anxiety. Whenever I think about my mom, her last months/days/hours a nervous feeling overwhelms me. I can only describe it as a hallow echo, as if my torso is made of tin, and every time my heart gives off a beat it ping pongs around my chest, bouncing off the sides causing this rippling effect that rattles my entire body.

I'm fortunate that I have no regrets with my mom, I knew she loved, me, and she knew I loved her back. I have so many beautiful memories of her that I'll never forget, but most of all I will never forget the way her voice sounded when she said, "I love you".
RIP  Mom, I'll love and miss you always.

As a side note, Brinley's lumbar puncture was on the 12th, she did not have enough cancer cells or white blood cells for a diagnosis. She had 3 leukemic cells, and 3 white blood cells, you need over 5 to begin treatment. She will have another lumbar puncture March 12th. The doctor as told us, "she will relapse, it's just a matter of when, it could be months, it could be weeks, but the foundation for relapse is there, we just need more cells."

Monday, February 4, 2013

Time to create some memories.

It's been a busy few weeks, which has been to my benefit because I've been able to focus on stuff, and not just, "has my kid relapsed?".  Last week my best friend came, she always manages to swoop in and give me encouragement  and she doesn't judge. I can talk about the ugly details, my worries and concerns, and I don't have to clarify, or worry that she thinks I'm crazy, she get it.

She was so pale
Brinley has been experiencing some sharp pains in her head, which ended her back in the clinic because she was very pale. Her blood counts were good, and I was able to chat with the oncologist who discovered the leukemic cells in her spinal fluid. He did let me know that more than one pathologist had confirmed they were cancer, and that cytogenetics more than likely won't have answer for us, but that was to be expected, I didn't have high hopes resting on cyto being able to confirm the cancer. In one week we'll bring Brinley in for a CBC and then on Tuesday (the 12th) she will have her LP and BMA (lumbar puncture, bone marrow aspiration). Her oncologist figures we will see more leukemic cells in which case we can skip over cytogenetics. He thinks it's just an isolated relapse, which is good, it'll be hard on her body, but the out come is very good. It's just a very long 12 months of chemo.  I still can't believe I'm even blogging about this...ugh.

The next little while we are in limbo, we're not sure whether we truly celebrate off treatment, or if we prepare for the next chapter in this cancer any case, Blake and I figured this calls for a trip to Disneyland. It could very long time before the 4 of us get quality time together. Wednesday, we'll get the kids from school at noon, and make the 5 hour drive to California  They have no idea, we've told them that Brinley has an appointment in the city, and we have to take Carter because we wouldn't be home in time to get him from school. So from Wednesday to Sunday we'll be in the happiest place on earth, trying to take in every happy moment.

Here are some pictures from Brinley's recent photo session with The Gold Hope Project.