October 30, 2010

Prepared for Anything

After our my appointment yesterday, I turned to James (home for not even 24 hours) and said, "Well, I went into that appointment prepared to hear anything except that"... And on that note I will leave you dear readers in suspense (ignoring your ability to scroll down and read ahead) and back up a bit. Actually the appointment was so confusing that I scarcely know how to summarize it.

I went for my MRI on Friday Oct 22. I was very unconcerned about it, any amount of anxiety came from my dread of having another IV. I know I should be used to these things already, but I HATE IV's! They don't make me nauseous or anything like that, it is purely the physical sensations of something penetrating my skin and going into my veins. Ugh! But after being poked and prepared, they slid into the MRI machine. On a sidenote, I did pause to wonder who the inconsiderate technicians were that did not think to offer me a heated blanket after making me remove everything except a thin hospital gown. So much for laying still during an MRI, I shivered the whole way through!

I was warned that this machine was louder than the others I have been in and they gave me headphones to protect my ears. Sure enough it was incredibly noisy. It occurred to me during the procedure that someone should write a musical-like song based on the noises made by MRI machines (purely for the benefit of those who have had to experience them). It reminded me of one of those scenes from musicals where the music begins with the coming together of random noises on the street. The tinkling of some wind chimes. The thump-thump of a woman kneeding bread. The thin streaming sound of a cow being milked into a tin pail. The crashing of the blacksmith's hammer. Etc, etc. etc.

Just like that, the MRI machine makes such random and yet rhythmic noises, that you never know what will come next. A silent moment broken by a loud buzz that makes you jump out of your socks (if I'd had them). I estimate that I would need about 20 MRI's to write the music for the ultimate MRI song. At one point the rhythm and beat reminded me of the Christmas song "Do You Hear What I Hear?". It started with a high whispered rhythmic beat, that was then echoed by an ear piercing base beat (same note but about four octaves lower).

Anyone want to back me monetarily for the producing of "The Ultimate in MRI Hits"? Just think of all the marketing opportunities. "Hey all of you cancer survivors! Don't you miss the days of MRI's, CT scans and IV's? You don't have to! We have recreated all of your choice moments in this compilation album for only $49.99!"

Anyway...

We were under the impression that this meeting yesterday was going to be revealing and informative, but in reality (surprise, surprise), it turned out to be another gigantic "Nothing to Report". I thought we were going to find out what the impact of the chemo and radiation had been, so I was asking all the wrong questions. Meanwhile the doctor was under the impression that we all mutually understood that this MRI was only taken to create a new baseline for monitoring purposes and not to reveal earth shattering information. To summarize the conversation would be very confusing, but even the information we thought was for certain seemed up for change.

Essentially, I was very confused which is why it was good that James (even in his jet-lagged state) was with me and able to understand. It didn't help that the doctor had a thick accent. (Incidentally, as we left, James turned to me and said, "Man, that guy's accent is awesome! I wish I had that accent!")

James' summary of the appointment was this: The MRIs that are taken over time are for the purpose of creating a "graph" of sorts, and only after we have had a number of these monitoring MRI's (every three months) will we know how the tumor changes (good or bad). The best indicator of my health is that in my day to day life, I am doing well, functioning without huge amounts of drugs etc.

I went into the appointment not really caring what we heard, but the vagueness of it only served to confirm thoughts that were already growing in me, those being: "I don't care what my medical prognosis is". I can't even imagine how irritating that appointment would have been if I had been nervously awaiting it and pinning my hopes on its outcome. Its hard to believe how much the information changes every time we hear it. As it was, James and I walked out of the appointment giggling together about how funny and inconclusive the whole thing was. We decided on the way home that our new approach is going to shift from "What are Jessica's limitations?" to "Jessica is going to do everything that she possibly can."

On a side note, I am not commenting on the competence of the doctors. Far from it, they are doing "their part", just as it is doing "my part" to live to my full potential during this strange and unclear time. If anything, the lack of conclusive information coming from the doctors is merely a reflection of just how much is not known about brain tumors. That is why I am not going to base my life on what they say. I will take care of myself to the best of my ability and not do things that endanger other people, especially the boys.

I bought my medical ID bracelet this last week and explained to Ari that if I ever fall down and can not talk to him, that he should find the nearest adult and tell them to look at my bracelet and they would know what to do. We have explained to Ari in child appropriate terminology that there is something in my brain (that is not supposed to be there) that sometimes makes me fall down and makes me unable to understand people. He understands that, and he seems to understand the bracelet too. We have decided to give the boys information in stages. As they understand more, we will tell them more. At this point time seems to be on our side.

That's all for now, except that it is so good to have James home again! I realized when he got back that I had been steeling myself against hope for his return. Somewhere inside I was convinced that something would happen to delay his return or that something would happen to him. Ahh, women are strange!

5 comments:

Sue said...

You are amazing! MRIs totally freak me out, but I can handle IVs.
I'm glad James is home and hope jet-lag won't be too bad.

Charlotte said...

Next time ...ask for the warm blanket!! if they don't offer you one! I think you have the right attitude regarding what the doctors have to tell you. Just live to the potential that each day holds for you.

Larissa said...

Glad to hear of your attitude, Jess. I am praying for you all....
And love the MRI idea... I've had a few and those things just freak me out! SO loud and claustrophobic!!!

Cindy said...

Isn't it weird how these appointments go...hope you're feeling well and able to do the things you want to do!

Shanilie said...

I am so glad James is home. It is hard for sure when our men are away.

That is disappointing when you want new info. Doctors must be trained to be vague lol and hard to understand accents drive me crazy. Hopefully this will help make monitoring things a little more clear.