Amber Chase's Musings on Cancer and Life

Maybe hate seems a little strong. Lets try LOATHE instead.  I hate the prep for tests, I hate waiting for the tests, I hate waiting for the test results.  Suffice it to say then, that I LOATHE the whole experience of tests. 
    I am concerned that the chemo is not working.  I am still having pain in the same places (left hip, femur, pelvis, sternum,) and it is getting worse not better.  Plus I am having more headaches and more pain higher up my back.  So when I went to the doctor on Wednesday, I requested some scans be done so we can see if the chemo is working.  My fear is that if the chemo isn't working, we need to know that sooner rather than later so we can get it changed to something else before the cancer gets too out of control. 
     So, the tough gal Meridan at Dr.H's pulled some strings and got me scheduled for a PET-CT scan a mere two days later, when at first they told her the soonest they could do the scan was Oct.9th. 
     I have had a little cold, so I wasn't sure if Dr. H would let me have Taxol this week, but I insisted and he did. Problem now is, the couple of days after chemo, all I eat are rolls, bread, crackers, and 7-up and *gasp* coca cola.  Well, to do the prep for the PET-CT scan, you get no carbs the day before or the day of.  And you have to lay in bed and rest.  No physical exertion or stress.  Notice the word stress.  I am a mother of 5.  If I tell the kids I need to rest, and not to cause me stress, what are they going to do?  You guessed it.  Have fist fights, and fight, and yell, and argue, and cause me stress.  Sheesh. 
      So, I had the PET-CT scan on Friday, I took some cool pictures of being injected with radioactive dye (doesn't that stuff cause cancer?) and I had the pleasure of enjoying my beverage of choice, barfium sulfate.  Only 3/4 a bottle this time however.  Now I have to wait until Tuesday to get the test results.  I plan on getting to the hospital a little early on Tuesday so I can go to medical records and have my test results in hand and read through, so I can go in armed if we need to make a chemo change.  I just feel like you have to take your treatment into your own hands.  These doctors are so busy and have so many patients, and I just have one patient to look after.  ME.  I need to take the best care of myself, and know as much as I can, so I can help the doctors give me the very best care that is needed. 

Todays date is June 19, 2008.
I already spent hours here at the hospital on Tuesday, but what a joy, I get to have the pleasure of spending another exciting day at the hospital. 

Day of tests, here I come.

I decided to keep a journal of the days events so here we go. 

This morning at 7:00 a.m. my alarm went off.  I just barely fell asleep at 4:00 a.m.  So I am starting the day on only 3 hours of sleep.  Not good.

It is time to start "bowel prepping" for my CT scan today.



I open the fridge and see the two, seemingly HUGE bottles of Berry Smoothie Barium Sulfate.  They might as well change the name to "Barfium" sulfate.  Two 450 ml (appx. 30 fl oz.) bottles of thick, gag making, stomach turning, foul tasting fun. 

Honestly, I think the hardest thing I have had to do since having cancer is drink bottles of nasty stuff for tests.  It is SO HARD to force yourself to drink these things.

can you see how thick and yucky this stuff looks?

7:05 a.m.
I have poured 8 ounces of this delicious drink into a cup.  I stare at it for a minute or two, dreading having to drink it.  I can already taste it.  I want to gag just LOOKING at it.  

I plug my nose, tip my head back and try to chug the beverage of the day, yet I just can't get it down.  As soon as I swallow, it just wants to come back up.  I got half of the glass down  I tell myself, mind over matter, it is just a smoothie.  But I just can't seem to trick my gag reflex.
7:10 a.m.
Finished with the first glass.  I rinse my mouth and gargle to try to get the thick coating out of my mouth.  Only 3 more glasses to go. 

I am SO going to buy myself a box of chocolates for a reward for having to do this.

I set an alarm for 8:45 a.m. when it will be time for the second glass.
8:45 a.m.
I know I have to drink another glass of this stuff.  Can't do it quite yet.
8:55 a.m. 
Have to drink it.  Piano student will be here any minute.
8:57 a.m.
Okay, enough procrastination.  I HAVE to drink this NOW.
Chug, chug, chug,.  Whoops, it's coming back up.  Hold my hands over my mouth trying to keep it down.  Can't quite.  I loose some of it in the bathroom sink.  I have about an ounce of this dose left to drink.  Figure if I drink it, it will come back up, so why torture myself.  Dump the rest down the sink.  I rinse my mouth and run downstairs to teach piano.
10:00 a.m.
I just got done teaching 2 piano lessons, and my 10:00 student is here.  I don't have time to be wishy washy and take 10 minutes to drink this dose.  So I gulp it down, trying hard not to gag while my piano student is sitting in the other room.  It actually went down pretty easy.
10:05 a.m.
My stomach is gurgling and hurts.  It SO wants to expel the foul contents that are in there.
10:40 a.m.
I finish teaching lessons.  My mom is at my house, ready to take me to the hospital.  Ready, set, go.  I give all of my adorable children hugs and kisses goodbye.  The worst is almost over, I only have one more big glass to drink.
11:00 a.m.
On the way to the hospital.  We stop at a gas station so I can buy a bottle of water so I can rinse and gargle after drinking my prep.  They had these cutest little breast cancer Chevron cars, and my mom bought me one for a prize if I am brave today. 
11:05 a.m.
I drink the last dose of barium sulfate.  I drink all of the bottle except for the last inch.  I somewhat guiltily throw it away.  I figure that cheating and not drinking a little bit of it will be okay.  I should have saved it for Dan so he can have the pleasure of sampling what I had to drink.

This is a picture of a CT Machine.  I don't know the actual name of it, but for those of you who have been lucky enough to never needed one of these tests, I thought I would show you what they look like.

11:30 a.m.
We arrive at the hospital.  I get checked in at Radiology.  They take me back and I get changed into scrubs.  A nurse escorts me back to the CT machine, and hands me another glass of Barium Sulfate.  This time it was luke warm.  Hard to drink it with an audience, don't want to gag and retch.  I ask for a glass of water so I can rinse and spit after drinking.  Got it down!  NOW the worst is over.

The nurse starts an IV so they can inject me with some dye.  I climb on a narrow little tray that doesn't seem like it is sturdy enough to hold me.  At least they give me a pillow for my head, and a wedge for my legs. 

They do the first scans, which only take a couple of minutes.  The tech then injects me with the contrast.  When this goes into your system it feels like you are standing in front of a furnace.  A wave of intense heat radiates from my head to my fingers and toes.  Very uncomfortable, and I have an giant wave of nausea.  Hope I don't loose it!!!!
11:50 a.m.
All done with the CT scan.  A tech from Nuclear Med comes to inject me with some radioactive dye to prep for the bone scan.  Now why couldn't they just inject me with something for the CT scan instead of having to drink that nasty stuff?

11:55 a.m.-1:00 p.m
Now that I have been injected with a radioactive tracer something in my blood, we have to wait about 3 hours for it to travel to my bones before the actual scan can be done.

So, I get a break from tests for a little while.  My mom takes me to lunch at TGI fridays.  It felt so good to get something other than Barium sulfate in my stomach.  By the time we are done eating, I am in the bathroom sick.  Ah well..
1:15-2:45 p.m.
We have time to go to the mall.  What a bonus!!!!  I even got my box of chocolate from Sees.  I spent more time in the bathroom at the mall than I did shopping, but at least I have my chocolate to enjoy tomorrow once my stomach *hopefully* feels better.

3:00 p.m.
Time for my bone scan.  This takes about 30 minutes.  They scan to check for tumors in the bones.  I LOVE the techs at NucMed.  They are the sweetest, kindest, best employees in the whole hospital. ;o)
You lay on a table and this big machine scans your bones from head to toe.  I have been injected with some kind of nuclear tracer.  It will make "hot spots" show what is going on.  All I know is that it is a heck of a lot easier to just be injected with something instead of having to drink something.  And then to top it all off, I read online that sometimes if you have had barium recently, that it can mess up the results of the bone scan.  What I read said that I should have had the bone scan before the CT scan, but it is too late now.  I am not redoing either of those tests. 

3:40 p.m.
All done!!!!!!!!  Easy!

My sister in law Katie had a baby yesterday, so I took advantage of the fact that we were already at the hospital and went to visit.  Her baby is ADORABLE!!!!  I love holding new born babies.  Her skin was so soft, and she made the cutest noises and pulled the cutest faces while she was sleeping.  A perfect end to the day.

5:30 p.m.
We make it home, after my mom dropped me off at Dan's work so he could drive me home. I am greeted with hugs and kisses.  I insist that I am radioactive so the kids have to stay away and let me rest tonight. 

Now I just have to wait to the doctor and get results.  The waiting is almost as hard as drinking Barium Sulfate.