The Most Normal Day Of All

How can it be that after all this craziness, today felt like the most normal day in the world?  Maybe it was walking Zeus in the morning, running into one of my favorite neighbors and having a long talk.  She hadn't heard, so I had to come out to her about cancer.  She asked all the right questions, and offered all the right help.  There are some rare people in my sphere.

Lucky me.

I organized our photos onto Snapfish, ordered bunches, and broke the laptop.  It might be totally dead.  As many of you know, it was a piece of crap anyway.  We had to balance it on Bennett's Candyland game so it wouldn't burn our legs or table.  I made a million calls that I've neglected - Zeus's check up, vaccines for Bennett.  I cleaned the kitchen for the first time in weeks (Pat has been doing a stellar job all these weeks) and talked to lots of great people on the phone.

Did you know that while I am on chemo, Bennett can only get dead vaccines?  I didn't either.  And that everyone who comes over must wash their hands.  And that I can't be around sick people?  How is that going to be in the Fall when Bennett starts a new school with all those germy kids?  Yikes.

The only not perfectly normal thing is the bag around my neck that holds a pump that pushed 5FU at regular intervals into my chest port.  It doesn't hurt, I feel totally fine, even better.  Pat's theory is now we know.  Now we know what chemo is like, how I responded to the initial doses of drugs, what the facility is like, that I am not going to go home and fall into bed for a week (yet, I will if I need to).  I actually love this chemo.

I tried like mad to get the 140 grams of protein the nutritionist recommended.  I hope I can poop tomorrow - that's a lot of protein.  And I have to drink 10 glasses of water a day - done with no problem.

I got to pick up Bennett from school today. We came home and had some serious cuddling.  She has taken to stroking the part of the pump that goes into my chest.  I think of that as her way of sending love into me to help me heal.  She is so earnest and intuitive.  Lucky, lucky me.

We also made cookies.  Cookies?  Almond flour, agave-sweetened cookies that Pat thinks are the biggest treat in the Universe.  I think Bennett felt like we had a pretty normal day too.

The Diagnosis and Today

It occurred to me while I was putting my lovely Bennett to bed tonight that not everyone knows what's really going on with my body.  So I am going to put it here and not pretty it up.  Get ready.

I have stage four colon cancer.  That means that it's in my colon (right by my appendix).  The tumor is "quite  large" and I did not ask what that means.  You know, they always compare tumors to fruit, so I don't know if quite large means a grape or a cantaloupe.  I also have a small tumor in my gut not really on a specific organ.  Some lymph nodes in that area.  The really mean things are the tumors in my liver.  They are on both lobes, so at this point surgery can't be done.  And the really shitty thing is liver transplants are only for people who have liver cancer NOT colon cancer in the liver.  Oh, all of this is colon cancer - the same cells every where.  That we know where it all is is really good.  I want to emphasize this. 

How did I know?  When Pat and Bennett and I were on vacation in Vermont, I thought I ate something really bad and had terrible cramps and a fever.  I slept for two days and felt fine.  That was my colon perforating the first time.  A week later at home, the same thing happened.  I thought if I went to bed for a couple of days it would get better.  Wrong- that was my colon perforating the second time.  I ended up going to my (now ex-) doctor and was given IV fluids for dehydration and sent on my way. I went home, took a nap and woke up with a fever of 103.  I took my butt to the ER. Okay, Pat and Bennett took me to the ER, but not before Bennett changed into her favorite bee dress. 

There I spent a week and had the procedures large and small listed to the right.  Trying to get better in the hospital is like trying to get better in the Subway.  Impossible.

BTW, two weeks before we went to VT, I had my annual check up and was given a clean bill of health.  This makes me furious.  I am not even sure furious is a strong enough word.

Take a deep breath, please.  My motto is (with the help of Janna and God) the doctors will be amazed when we check in two months from now.  They won't believe their eyes that the tumors have shrunk and totally disappeared.

On to today.

I got to UMASS Memorial at 9:30.  We left at 4:15.  I had about 10 drugs. I am looking at the list they gave me, but I am sure some are missing.

Pepcid, Zofran, Decadron, Compazine, Irinotecan, Levcovoran, 5FU two ways.  I know I also got two steroids and some Benadryl.  The Bendryl was for the extremely rare side effect of slurred speech from either the compazine (anti nausea) or Irinotecan (vitamin that enhances the efficacy of the LV).

You want to get some attention on a chemo ward, start slurring your words.  I am super impressed with how sophisticated the operation at UMASS is.  I had a really great meeting with a nutritionist to help me get the calories I need to stop losing weight.  I am thinner than I have been since, I think, JR High.  A year ago, or even 2 months ago, I would have been thrilled.  Now it freaks me out.

Pat and I played two games of Scrabble and watched Wallace and Gromit in "A Matter of Loaf and Death."  Scrabble-hater Pat totally kicked my butt.  She might like Scrabble a little better now. I did tell her to avoid playing with any other van Erps as they might not be as, um, I will stop there.

A good note to this post...here's Bennett in her bee dress from Aunt Mary.