Friday, December 26, 2008

Our Jammin' Christmas Band!

Ok. So no matter what anybody says, the number one gift this year for Zane is a little kid size guitar that Paul and I got him! We thought of it last minute. Added it to the already too many gifts and he hasn't taken it off ever since!

He LOVES the thing. It is even sometimes difficult to get him to go down for his nap because all he crys is "zane play tat! zane play tar!". He LOVES his picks which are giant size ones so it is easier for him to hold onto. He also plays with just his fingers and somehow knows how to hold them properly. He also likes to use the pages out of his coloring book as his "sheet music." He came up with that one himself. It is all about him soaking in his world. Kind of like how he likes to get in his car and "talk" on the cell phone... whoops!

So enjoy this video taken this evening after dinner. Our jammin' Christmas band at its best! Please excuse the shaky parts. The camera lady sometimes has a hard time!

Check out his awesome foot tapping and his super cool "rockin' roll face" that he came up with all on his own! He is SO ROCKIN' ROLL!!!

Wednesday, December 24, 2008

Merry Christmas Eve...

As I get ready for bed after a long day and fun night with the family, I am thinking of all my family and friends that are also either snug in their beds or preparing madly for Christmas. I hope you all are happy and well. I am sitting down getting my little guy's stocking shoved full of stuff and ready so that I can wake up at wee hours of the morning to sneak it into his bed so that he will wake up to fun things (including some CUTE Elmo slippers!... just like PCII's!!!). I am so ready for bed and Christmas snuggles but we have some continuous neighborly cantina music that is keeping our celebration going. (Time for the neighbors to go nighty-night!!!)

Merry Christmas to all of you lovely and beautiful people.

Tuesday, December 23, 2008

Merry Christmas

I just really needed to get on here and do a simple update so all you out there could stop looking at those horrible pics of the face mask crap! So sorry I did that to you! (So sorry more of that will probably come... but it will be over soon!)
Anyway, I hope this finds you all in great spirits and ready for the big day comin' up!
Much love!

Thursday, December 11, 2008

I feel like i have reached my limit

Today I went for my CT Scan that sets me up for the radiation. I thought it would be a quick in and out but like everything else, it never turns out the way I thought it would.

So in the process I got fitted for my radiation "mask." I barely made it through the "fitting" and I don't know how I am going to go in 17 different times to put it on again for any length of time. I am still processing. I can't even talk about it yet.

To give an idea of the mask, I found some pics online...
(None of these are of me, of course... mine covers my neck but not my shoulders like one of the pics.)

I am having them cut me a nose hole because I just can not handle it. Maybe one for my eyes and mouth too if possible. We will see. But the nose hole is not going to be an option.
Now to fit you with this, they stick the sheet of plastic in a warming oven and make it hot. Then they press it over your face and lock it down in about 5 different places. Then they turn on a super fan to cool it into shape. In the mean time your shoulders are being pressed downward (away from your neck) and your head and neck are resting on a most uncomfortable hard plastic "head holder thingy."
This is all so that the radiation goes to the same exact spots every single time. So that it doesn't hit any "healthy" tissue. Only the infected parts. This... is a good thing. This... is a good thing. This... is a good thing. Ummm, Totto? Tin-man? Is anybody out there?
I can not believe how uncomfortable I am with this radiation thing. I need something to slam me in the face and put things back into perspective. Maybe not. Maybe just another Xanax. Yeah, maybe...
This is all such frickin' mad science. It is all so darn eerie to me.

Wednesday, December 10, 2008

Nothing More. Nothing Less. For right now...

I know this is something that I should have been keeping up on a little better. I have been busy and overwhelmed with a lot of 'not knowing' and so have not been keeping up with my health updates very well.

So, I am attempting to sum up what has been going on.

On November 20th I completed my 12th full infusion of chemotherapy. At that point, it was unclear as to whether or not I would receive 2 more infusions of just the bleomycin that I had to skip in 2 of my earlier treatments. This decision was all pending my results of my Pulmonary Function Test. I had this test about a week after my 12th infusion and the results were not positive. My lung functions have decreased. This is due specifically to this bleomycin that they give me in my "cocktail" of drugs. It is unknown as to whether this decrease in my lung function is permanent or temporary... or a little bit of both. I guess in the grand scheme of things, it could improve from where I am now, but not recover to where I was before. I can tell you though that I feel it greatly. I KNOW that my lung functions are down from before and I knew it walking into that test. At this point I will not be going on any "hiking" focused vacations. I am lucky to get through a walk that is a mile in length. That is sad. But I hope for a piece of recovery in that area. The possibilities are great but I suspect that it greatly rests in time. Give me time and I will come hike with you.

So, because of the results of this lung test... I am not getting the "make-up" treatments.

That step was followed up by a CT Scan on Monday. Full on (if you all remember) with pre-treatment for my allergic reaction to the dye they inject. Yeah! Monday I was pumped full of steroids and antihistamines that, this time, made me VERY agitated and angry and uncomfortable and and and

And let's just say I feel really sorry for Paul. He was so good about it. I came home with STILL a mild reaction to the dye (even with all that prep!). I have to say that I could really do without this ridiculous reaction to this dye. It is SUCH A PAIN IN THE ASS and I become just that as well.

So yesterday I heard from my doc that as far as the CT Scan shows... no big changes since PET Scan 2 1/2 months ago... highly recommend radiation therapy.

So, off we go to an appt. today with my radiation therapist. She is really nice and showed us a lot of positivity in respect to the outcome of radiation. Paul feels really good about all this (and he should!) and I will just wait and see. Something is happening to me. I am not negative about things. I am just more cautious and suspicious. I will do what I need to do. But I am a bit more reserved. And so it goes...

I go in tomorrow (yes appts. ALL the time!) and get a CT Scan again BUT this time without any dye! Thank you for small favors, right?!? This will give them a picture to start using to set up the radiation targets. I will also get some foam thing fitted to me so that every time I go in there I lay on it and it will put me in the same position every time. Then, after a couple of days they will have me back again for another scan and verify positioning and also to do my radiation target tattoos (little blue dots they put on you to use as targets... crazy. and yes, they ARE permanent... hopefully to be turned into something beautiful later!). So, looks like I will be starting radiation the week of Christmas. I will go for 17 treatments and from there, well, no one really knows, right?

Also, I feel like probably clearing up the scan issue that is so confusing. I don't totally know what I am talking about but I will put this in terms that I know. The CT Scan is showing a "mass." This does not mean that that mass is cancerous. I could always (for the rest of my life) show a mass in a CT Scan. This could be due to scar tissue that is left behind from the tumors. When they do the PET Scan they inject me with nuclear medicine that attaches itself to glucose and glows on the scan. This is an indicator of cancer cells. (Please excuse anything I messed up in this explanation!) I guess the most important thing to note is that just because the CT Scan showed a mass, this does not mean that that mass indicates cancer. I will probably not have another PET Scan until after radiation treatment.

It is all quite a mind f***.
That is just what it is.
Nothing more. Nothing less. For right now...
And so it goes...

Saturday, December 06, 2008

HI Grandpa Dan & Bobbi!!!

Just wanted to do a quick shout-out to Grandpa Dan and Bobbi up in Ohio! They are on their way to the library there to take a look at our blog and I thought I would do a quick post to surprise them and say hi!
Love you guys!