Scan Tomorrow

Yikes! I am nervous. I am trying not to be, because I know exactly what happens when you get a CT scan. I will describe it for those of you who have not had the pleasure. First you can't eat or drink anything four hours before the procedure - since my scan is at 8:45 that pretty much means nothing after I fall asleep tonight. You get there, they put you in a Johnny gown and then the worst part - you have to drink about four or five cups of this nasty nasty liquid that is flavored in a way that is supposed to cover the taste (so far I have had coconut twice and eggnog once - how about a nice chocolate? Eggnog? Really.) of the radio isotopes or whatever they are putting in me to make my insides light up. Then I have to wait an hour for the liquid to travel throughout my digestive system. Then just before the scan. two more indignities - another cup of nasty goop and a shot of something through an IV that literally makes you feel like you've wet your pants right there. It is the most uncanny feeling. Then they strap your arms over your head, and put you in a giant donut shaped machine that tells you when to breathe and not breathe and makes a lot of banging noise. The room is freezing and dark and loud, and for some reason the light is always blue. I wish I could remember how long the scan takes, I remember the PET scan was 26 minutes because I asked while I was stuck in a claustrophobic beige tube. I only opened my eyes once and then started praying like mad. It was really scary.

This is nothing, absolutely nothing, compared to a liver biopsy which is about the worst procedure I've ever experienced in my life. I am not even going to continue writing about it, just know it was horrible and I wouldn't wish it on my worst enemy (if I had one).

As procedures go - liver biopsy worst, PET scan second worst, CT scan not that bad. Honestly, it's the week long wait for what the tumor board has to say that is going to be the hardest. I am just trying to give it to God and hope for the best. What is the best? Totally spontaneous remission. Okay, if I can't have that, I will take significant tumor shrinkage. So, put on your best light gathering equipment and send that light my way. Pray, gather and send light, light a candle, whatever, just think tiny disappearing tumors.  Thanks,

I will get the results on Friday, Dec 3 at 1. I will, of course, be posting about it that night - good or bad. You all deserve to know asap since we are all in this together.

Just Another Day

Of rest and relaxation and frustration. I am obsessed with getting this drug that helps WBC counts. All day I have been trying to figure out a way to talk my doc into giving it to me. I've asked twice already that I can remember. Pardon if I am repeating myself, but I can't understand why I can't have it. It's a drug called Neupogen, there's another one called Neulasta. They are expensive and have some side effects. Okay, what in this process isn't expensive (I happen to know my PET scan was $5200), and I am getting to know more about side effects every day. This totally blows.

Don't forget I am coming off being pretty angry about not getting chemo yesterday. I am also despairing of the fact that I have not once been able to have chemo on schedule (supposed to be every other Tuesday).

To be fair, the explanation that I got about not getting the WBC shot, is that they only use it for people who have much more rigorous treatments - let's say every week and it is not possible WBC counts in that time frame. BUT BUT BUT I want to say "I can't recover in two weeks, give me the shot." I will keep you posted on what Dr. B. says, I will call him tomorrow.

Here is the fab quilt that my sister-in-law sent. I forgot to say that Trisha specifically used fabric with bees just for Bennett.

Today was a quiet day - other than the obsessing. I hung out in the new bedroom while the cleaning lady made our house look a lot better. It's hard when everything is so old - the tub has got to be 60 years old, and the linoleum too. So it's clean, but it's worn, and it's ours and I love that it's all clean. I am so happy to have a mom who encourages me to do things like hire a cleaning person. She has an unusual name, so I don't want to use it without her permission, that is why I keep calling her the cleaning lady and not by a name. I did exactly what a person who is neutropenic is supposed to do - sat on my butt and did very little. I watched two TV shows about medicine - Grey's Anatomy and House. You'd think I wouldn't want to, but they were oddly compelling today. I knitted, I painted with Bennett. Here is one of the paintings she did today. Notice the pupils in the eyes - when she was painting them she said "and now the eyeballs." Pure genius.