Lets Jump To No Conclusions, but...

April 2, 2009

Hi Everyone,

Well today was the end of the Gallium study. I was glad to say goodbye to that dreaded ("coffin like," as Lauren pointed out) machine, but it did not end without a taste of negative forbearance. However, I don't want to jump to conclusions, but at the sake of this blog and the idea that I am now documenting the roller coaster ride that is having a terminal illness, I thought I would share the day's events with you and let you draw your own conclusion -- but please, don't jump to any conclusions. I figure, if I don't get to freak out yet (and my loving and caring friends refuse to let me completely freak out without mocking me relentlessly), then neither do you... and that's said with so much love... I promise!




So I'll start at the beginning. I woke up this morning to the realization that despite the almost 14 hours of sleep I got last night this was not a good day for me. Usually days are correlated with the amount of sleep received. Today was an exception. I hurt, so badly, all over: the kind of pain that's defined as 'cancer pain' among oncologists, the pain that's caused when tissue necrosis and dies, affecting the nerves around it, sending "Mayday!" electrical signals through the nervous tissues, registering in your brain as deep, and throbbing pain with your occasional surprising and sharp jolt of random irritated nerves refusing to go down without a fight. This, combined with the fact that I woke up drenched in sweat and already tired meant today was going to be a rough day.

If it wasn't for the fact that if I didn't get the Gallium scan today I would have to start the whole study over again in that dreaded machine, I wouldn't have moved today, but I had to, so I did. I was completely exhausted by the time I arrived at the hospital 45 minutes after awaking and I fell asleep in the waiting room. I finished my study in what felt like three years inside the claustrophobic machine, and I heard the doctor in the room with me. Thus far during the week I hadn't seen the radiologist much, just enough so that I was familiar with who he was. I felt him standing beside me in that big machine watching the monitors and the images as they appeared, and then I felt him leave.

Now the Nuclear Med Techs that have been taking care of me this week are Tom and Sonna. All week long they've been jovial, warm, kind... yet were also the first to tease about my innate clausterphobia. "Ahhh! Big NeuroSurg Nurse all freaked out by an imaging study," They teased. But when the study began they would talk me through it and offer warm blankets to keep me warm. These people are really nice, funny, good people.

When the machine made that last and final "BEEP" which indicated we were done with the study, I almost jumped off the table. Tom said, "We need you to wait in the waiting room, the physician wants to look at your studies." So I waited, and 20 minutes later the same physician whom I'd seen earlier called me back. He wanted to talk about my symptoms, how I'd been feeling, ect, since he only had a limited amount of information from my chart. He then showed me some "areas of concern" on the Gallium scans, mostly in my head in neck areas, that he felt were "incongruent with what we would expect to see after treatment." He wanted a better, more specific picture, so he ordered two more scans: a SPECT (Single Photon Emission Computed Technology) scan and a PET (Positron Emission Tomography) scan to get a better picture, both of which were done inside the hospital today. Here's the original Gallium Study Photos. You'll see that pictures were taken after several "delay" periods...

And there's no way around it. If a regular camera adds ten pounds, then getting squashed like a pancake between two cameras has got to add to add 50 pounds. In real life I am not this fat. In fact, I was almost as horrified about how fat I looked in the images as I was the realization that I might not be out of the woods yet. Almost as horrified.









Now, as I understand it, the only things that really SHOULD show up in the Gallium study are: a few bones, your liver, sometimes part of your intestines (as the Gallium is excreted), and that's it. Other places where the Gallium is collected is areas of acute infection (visible within the first 24 hours) chronic infection (48 hrs) and lymphoma tumors (72 hrs).

So after the 72 hr mark is when I spoke with the physician and he ordered the additional tests. I was able to get copies of the Gallium study and the SPECT study but not yet of the PET scan. I was trying not to freak out.

Here's some of the images from the Spect study. You can see the areas in my head and neck that are definitely of interest as the same rules apply: you want to see some bones, liver, intestines... ect... For the SPECT study that machine they used to do the regular Gallium scan actually rotated around me 360 degrees to get a more thorough picture of my head and neck. Again, this is a 72 hr delay.





And so basically I bought myself another 45 minutes in the clausterphobia-mobile. And a PET scan.


If that wasn't enough to freak me out just a little, apparently the physician had said something to Tom and Sonna, because they starting acting very strange. They were acting sad and touchy-feely, and Sonna even slipped up and said something she probably should'nt have: "Maybe the biopsy will be negative." And nobody had talked to me about a biopsy.
As I was leaving, I saw the doctor with *what appeared to be MY* chart in hand, heading across the parking lot, on the cell phone. So I don't know what that means. Exhausted, I came home for a "nap," one that I've grown so accustomed to taking, the "nap" that starts at 2 pm and ends at 10 pm, when I want to wake up, but I don't have the energy to wake up, or move, or even roll over, and when I do wake up, I wake up soaking wet in a miserable cold night sweat, and wake up ticked off and frustrated that I am,*quite literally*, sleeping my life away.


My overall feeling regarding the scans is not a good one --- at all. I didn't have a good feeling about it from the beginning of the week, and today just confirmed for me that I was on the right track. But I don't want to jump to conclusions.




So tomorrow I pick up the preliminary report. I went ahead and called my boss and asked for Friday night off, just in case it's bad news. Either way, I'm exhausted after this week, I have a 10 page research paper to start (which I haven't even thought about!) and I am still hurting.

I will *try* to post the results I get tomorrow. If it's really bad news -- like *really! bad news* I might not be able to do that, but I will try. You guys can always call me too.

Love always,

Rachele