"Well That Sucks!": June 2012

First off I need to start this off with an apology, I had no idea how many people read this blog & actually make it through my crazy writings, I’ve heard a few people have missed me (People actually read what I write?! Cool!). I know I’ve pulled away lately… I kind of hit, what I like to call “Amber’s patch of thistles” – in my garden in my brain.

Yep, you heard me..

In my brain- the garden of thoughts, the flowers of actions, the landscaping of sanity…my own personal garden started to grow thistles….

I think one of the most unspoken sides to childhood cancer…. Something that you never really hear or focus on is…. How is mom & dad holding up? I bet a few of you are thinking now “I asked Amber all the time how she’s doing, and she said ‘Fine’, so isn’t she fine?” Cancer parents learn pretty quickly to come up with an automated response to certain questions…

How are you doing? Fine, thanks.

How is your kid doing? Fine, thanks.

How is chemo going? Fine, thanks.

Is there anything I can get you? Chocolate… err, I mean, I’m fine, thanks.

Is there anything going on? Chocolate… wait, that was the other answer.. I mean, I’m fine- thanks.

What do you think of the candidates running for election? I’m fine, thanks… oh wait, you asked me a real question that involves thought… ummmm…. I vote Ralph Wiggum (Did anybody laugh at that joke?).

A few months ago, there was a big concern that came up and we had the fear that Tucker had already relapsed with his cancer (within his relapse we are already dealing with)…. I was terrified… probably one of the top 3 most terrify childhood cancer memories I have (ugh, how many people can udder that phrase?)…. BUT- We did a spinal tap, tested his fluid… and he’s clean, there were no cancer cells to be found- WHEW!!!!!!!!!! (I did grow a few more grey hairs that day). All of us holding our breath let out this big huge sigh of relief…. It was like we were on PAUSE… and then the doctor reached over and hit the PLAY button… and we were just supposta take off and “play” from here, move forward with life, still on chemo- but at least making progress with the cancer we are currently fighting…. Well… as Tucker & Justin started to move forward, I noticed (not until later) that I wasn’t moving, I wasn’t just on PAUSE- I was on STOP. I had left the garden in my brain un-attended… and like weeds do, if you don’t keep up on pulling them, they will take over- I’ve never really gotten to that place before, where I just, I guess the easiest way to describe it was… I was DONE, totally absolutely DONE, I was walking around in my mind looking at my garden and I saw….thistles. I had one thought- DONE, AMBER IS DONE, I’M DONE- THIS IS SO DONE-I CAN’T DO IT, I’M DONE.

Now what? What do you do when you’re in a phase that you don’t even know you’re in, and you’re thinking thoughts you didn’t even know you were thinking, and everybody else was moving forward- but you- and nobody else noticed- BUT you? How do you deal with a situation that, honestly, you don’t think a kid with cancer’s mom, should be in? Aren’t’ all kids with cancer parents like ultra super man/women? They can handle anything! How often do you find yourself sitting back thinking “I don’t know how he/she does this! I could never do what they are doing!”…. Trust me, I bet all the other cancer mom’s out there… they may put on a good front, I bet part of their gardens have thistles growing also- but maybe not, and it could all just be me- I know a lot of them are superwomen and I’m amazed all the time at their strength and courage and I endeavor to handle this situation like they do! I just think that this is due to the fact me and Tucker have been fighting cancer now for 8 YEARS….. my brain is tired, I feel like I’ve had the weeds growing for a long time & didn’t know it, what do you do with weeds that you don’t know you have? You think everything is fine- you think your garden is beautiful….and then one day you step on a thistle, and you hop around and cuss until you pull that thistle thorn out of your big toe…. Then you pause, take a look around and realized your screwed, all the beautiful flowers you thought you were tending to, were all just thistly weeds.

You’ve probably read all of that and are just totally confused,- what the crap is Amber talking about? Thistly weeds in her brain? Or is she really going off about gardening and how in the HECK does this tie into childhood cancer? Hey if you’ve read my past blog writings, you should totally be expecting something confusing, it takes me painting a picture in words to explain to you whats going on in my life….

Amber’s no-fail steps to battling weeds in your garden….

First step, realize you grew weeds, instead of beautiful flowers….(so in “normal non-amber-crazy- talk”- realize you have a problem, you’re on “STOP”, you’re DONE, essentially… you’re not “FINE”)

Second step- go get a great weed killer…. (Translation: Go to doctor and get strong meds to assist you in this battle)

Third step…. Actively try to kill the weeds… (take your “weed killer”, go for a run, work on some hobbies, try to do what you used to do when you were a normal functioning person-you need to re-train your brain how to function again- how to be a normal person again)

Fourth step- if the other 3 steps haven’t helped you out- throw in the towel, gardening was never my thing anyways & opt to get a new puppy (we did, & named her Lucy).

I just totally pulled away; I didn’t want to think about cancer let-alone write about cancer- I went through this big “poor-pity-me” phase and I thought nobody cared. I’ve realized now that I’m wrong especially after I’ve had many people tell me “WRITE ON YOUR BLOG!”. I’m doing better now, I’ve just ran in the RAGNAR Wasatch Back Relay Race a couple of weekends ago (I’m still sore) and I’ve been trying to slowly pull myself out of this slump.

Like I said I know it’s a side of childhood cancer that nobody really talks about- I needed to address that side…….. and if I had a million dollars I would pay for 10 full time therapist to spend 100% of their time and focus on all of us cancer mom’s & dad’s. Hey, if anybody is reading this and they are a therapist and want to donate your time… let me know.

Ok, enough with Amber-Crazy- Ramblings….. On to Tucker…

Tucker is doing ok. We are on weekly chemo schedule, Tucker’s home nurse comes over every Monday morning and pulls Tucker’s blood so we can get blood counts- all of his levels have to be above a certain point in order for us to have chemo the next day. His counts on this Monday were ok- not great, but he’s been worse and they were just high enough to pass counts. We are currently on week #65 ish of treatments…. We have like 120 ish weeks total… we are about half way done with treatments- I had very split feelings on this… my emotions were like- YEAH, HALF WAY DONE….. OH MY HECK ONLY HALF WAY? WE HAVE DONE THIS MUCH AND WE ARE ONLY HALF WAY?! YOU’VE GOT TO BE KIDDING ME! YEAH WE SURVIVED HALF WAY! See all the highs and lows? Welcome to my life…. Please feel free to dish any sympathy out to my husband Justin who has to deal with my crazy every day- LOVE YOU HONEY!

We did chemo today, he got Vincristine and something else that starts with a “C” and ends with “Toxin” I can’t quite remember its name and I know I couldn’t spell it right anyways….. he is at only 75% strength of chemo dose because his body and blood can’t handle 100% strength…. Every time we raise his chemo strength his blood counts crash and it delays chemo & makes him sick.

OUR BIG CELEBRATION TODAY-- BIG news for today…. The ONE thing that was different that brought tears to my eyes…. Tucker decided today that he doesn’t need to numb his skin, no cream, no freezing stuff, on his skin above his port site before they poke him. This. Is. A. Huge. Deal. He is no longer my little 4 year old boy afraid of needles and pokes- he can do it without any help. *sniff* my little baby…. All grown up….

Ah dang, I’ve got tears in my eyes again…

Anyways…

First you have to understand what a power port is… A power port (Wikipedia definition) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

So for most of the cancer kids, they get this port put in and it lays right below their skin, so instead of “fishing” for a vein- which we all know can be painful- they install this little port and that is exactly where they poke the needle every time- no fishing, no guess work- its just right there. Well before we get up to the hospital, we put a numbing cream on his skin so he can’t feel the initial “poke” of the needled, we also do this every Monday morning before his nurse comes over to take blood. Most parents/kids do this…..prepare the skin for the poke- from dealing with kids and needles at such a young age its just better to get rid of the little poke they may feel all together and that takes a little more fear out of the whole process, any little bit counts especially when they are that young. Well today Tucker said he didn’t need any cream *sniff*… he was big enough to handle it without cream *sniff, sniff*… and he couldn’t figure out why me, and all the nurses up there and his doctor were making such a big deal out of this. They were all clapping and congratulating him and we were all just so happy, we all knew what a big step this is for a kid…. And he was just SO cute. And I just sat there and cried, my little baby…. Not afraid of needles, he can handle the poke now. About a year ago, he still had to hold my hand for the poke, then he stopped holding my hand…. And now, no cream- where has my little boy gone?

Anyways, I have lots more to say but I had better wrap this up, its getting long. Please forgive me for my delay in writing a post about Tucker… I promise now to keep it up, you all love him and its important to keep you all up to date on his progress.

We are half way through… Hell yeah… we made it half way….. the 2nd half had BETTER be easier than the first.

Love to all

My-baby-boy-is-growing-up, Amber

My-wife-is-a-tad-crazy-&-super-hot, Justin (yes yes, I wrote the post, not Justin…. We’ll see if he even notices I wrote that…)

Hold-the-cream-I’m-a-big-boy, Tucker