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.

Chemo Yesterday

Yep, got chemo and was so exhausted I went to bed at about 6:30 last night - so no post. Not posting is one of the last things I thought of before I fell asleep. This is what I was going to post "Got hit by a truck, got up, got hit by a truck again, stay tuned for news of my miraculous survival." But I just couldn't get up the energy.  That does pretty much feel accurate.

Right now I am pretty okay. Freaked out about everything as usual. I just wish I could get more hours of the day when I am not scared out of my boots, as my mom says. I have moments when my mind is still and then I snap out of it. I have some great relaxation tapes that help, but I need stillness to be a greater part of my life. Any ideas of how to get there? I will take any and all tips.

Tomorrow I give my pump back and get my first Neulasta shot. Then I have my CT scan on the 27th. I won't know anything about it until Dec. 3 at the earliest. That is the date Dr. B. will present my case to the Tumor Board. That's the multidisciplinary team that decides what the next course of action is. I am having chemo on the 1st, so my guess is that the TB will recommend more chemo. The other choice would be surgery, which you all know I want. It's not really an option until my liver clears up a little. There are so many tumors on my liver that it is not operable at the moment - it might be different from this course of chemo, but Dr. B. said that would be unlikely. The thing about Dr. B. is that he has to tell me a lot of bad news, so I think he's more of an asshole than he really is. Since I met with him yesterday, I think he's a pretty big one. One day he will give me good news and I will think he is a saint, until then,,,

Thanks for all the well-wishes yesterday, they were well needed and appreciated. I am pretty tired right now and have to get a very sad and tired Bennett off to bed. I am not sure what the matter is, but as you can imagine she is stressed out too. It's pretty likely she doesn't know what the matter is either. How that breaks my heart.

A Half and Half Day

Really I should say the day was 3/4 crappy and ended well. Well, it hasn't even ended yet, but I am predicting that all will continue to be okay for the next two or three hours- um, two hours. I am pooped, though that is not new.

The day started with me feeling faint and dizzy. I spent most of the morning and early afternoon lying down. That was all I could do. I tried to sort the laundry and ended up prone on the bed with weird colors before my eyes. I took that as a sign. I dozed on and off until noon, woke up for my second Ensure of the day and hung out with Bennett on the futon. Beryl and Ali brought over delicious potato soup made with a secret ingredient - love - it said so on the ingredient list. I had a bowl of love soup for lunch and went back to bed under my love quilt. I went back to bed after Pat took Bennett over to Sandy's to play with BFF Avy for a couple of hours. It was really good for all of us. Pat stayed home sick, and still had to take care of us. So having respite in the afternoon was a Godsend.

We spent that time dozing some more. And when Pat went to get B, they had to go to the store. While they were at the store, I listened to a chemo visualization tape. It's a little strange, but really helpful. I felt much much better after. Much more hopeful and I have to say with that tape it's the first time I've imagined my liver nice and pink and free from tumors. That is a very nice image.

I forgot to mention that Dr. B. called. My relationship with him is one of a lot of anxiety. I am not sure how it happened that when I think of meeting with him, or talking to him, I get a surge of panic. I am sure it's because we are always talking about cancer and tumors and treatment when we meet. He called to tell me the next time I get chemo they are going back to my original dose - that is twice what I got this week. I will get that plus the Neulasta (WBC shot). He said I can expect to feel bad for five days after this next chemo. Something to look forward to. I am pretty sure he is trying to get me all chemo'ed up before my scan. I am supposed to have a CT scan at the end of this month to make sure we are on the right track.

He also called to tell me that this certain blood marker that had gone up (bad) after going down for four tests in a row, had gone back down (good). And that the up measurement could be considered an anomaly. Let's pray that continues- the going down part, I mean. It was also revealed that my scan has not actually been scheduled and that's a big bummer. I have to work that out on Monday.

November is going to be a hard month with lots of days when we are going to need help. I am putting that out there, because I know there are people out there who sometimes wonder if we need help. The answer is yes. Mostly with taking care of Bennett during the week. Maybe picking her up from school and keeping her until we get home from Worcester. That kind of thing. We are going to look at the calendar for more exact dates, but if anyone out there can lend a hand, let me know. We really really know that we couldn't do this without so much help. Just today Beryl, Sandy and Snow Farm all gave us a hand and that brings me to tears. As Pat says, people are good.

Tomorrow Chemo

Yes, tomorrow is chemo. At this point I feel little like maybe it will happen and maybe it won't. Everything has been so unpredictable. I have no reason to believe that it won't happen, it's just that before my second chemo I had to wait an extra week, and before my originally scheduled third chemo I was in the hospital. So let's just hope that this goes off without a hitch - my WBC are okay, the drugs are in stock, and whatever else that I can't think of won't happen.

I had a really great day today. Took Bennett to school, walked the dog, even got into the studio for an hour. I designed the stained glass that will go over the door in the new bedroom. The thing about being in the studio, is I have to be present in order to make work - I mean really present. And that is hard, because I have to think about all the things I try not to think about all the live long day. So I worked for an hour and that is what I could do before I started getting afraid. Maybe Thursday I can do it for longer knowing that I survived today's hour just fine. The fear did not kill me and it never will.  It's just fear. Frickin', wily-assed fear that is my worst enemy- keeping me from my living the way I want to be in my life.

I also got my hair cut today. I had a great experience with Julie's fab hairdresser at Salon O in Easthampton. She made me cry by not letting me pay. Another example of the incredible generosity that comes to me.

I am not sure always how to take it, but I know everyone just wants to do what they can in a situation that is so disempowering. Is that a word?  How about a situation that scares the shit out of everyone? That's probably more accurate.

Today I heard a story from a friend about a guy who has colon cancer and it is also in his liver. He had surgery and had to have 1/5 of his liver removed. Lucky bastard, is all I could think. Of course I don't know the whole story, and of course I am also very lucky, but it's that same thing that makes me jealous of people who seem to be less full of cancer than I am. I have to remind myself that cancer sucks for everyone who gets it. Period. And that kind of thinking helps no one, and doesn't change a single thing. Not my cancer, not his cancer, not the absence cancer in the other people's bodies.

Okay, so let me keep my eye on the most accessible prize - tomorrow's chemo. I want my little pump back, whispering it's hard work to me for 46 hours, reminding me that we are all working hard to save my life one whoosh at a time.