Chrysalis

Road Trip!

How's that for an optimistic title?  My friend Deb volunteered to take me to Chapel Hill this time, and honestly, except for that pesky chemo stuff, we did have a really good day.  We left my house around 5:00 AM, better known around here as o'dark-thirty.  It was beautifully clear with the almost-full moon visible, but very very cold, and have I mentioned lately that I'm sick of winter?

Deb neglected to tell me until we got on the interstate that "I don't drive in the dark very well, and I'm scared of deer," but the deer were apparently still sleeping along the most notoriously deer-heavy stretch of I-40 and we made it to daylight without any of them deciding to hitch a ride on our truck.  Road trips of a morning require biscuits, so about halfway to our destination we stopped at Bojangles, home of the best roadfood biscuits (I had a country ham biscuit and chocolate milk-yum).  This is the first trip I've made to CH that didn't require me to have an empty stomach, and I was happy about that.

First stop at the Gravely Building was mammography, where I had a long-postponed mammogram (everything is fine) and was in and out in record time.  My next appointment was with Melissa, who works with Dr. Big Dog.  We chatted for a while about side effects from the last round of chemo, then she sent me up to infusion to get started.  I was dismayed when they assigned me to an infusion chair in a room with other patients; there were five in our section, and there were eight in other sections.  It turned out to be all right; everyone was cordial and there was some, but not too much, chatting back and forth.  One of the other women was having a birthday and all the nurses came and sang (some of us sang, too, poor woman).  I figure at least I wasn't getting chemo on my birthday so I was ahead of the game. 

Since I'm sick to death of looking like a bag lady, I decided to dress a little bit better than usual-jeans, a great black sweater that was a gift from my sister a while back, cowboy boots, sparkly tiara and of course my lucky charms.  I looked good, too.  Of course, yesterday was the day that my "appliance" had a blow-out, which was Not Fun.  Although if one must clean up shit, one should probably always wear a tiara.

Since I was in a different wing on the infusion floor, I also didn't have Jerome as my nurse.  Although quite competent, Nan was no Jerome, but we managed anyway.  A new drug, Avastin, was added to my regimen yesterday, which inhibits the growth of the tumor.  Then I got my regular oxaliplatin.  Deb and I were able to visit for several hours, and we pretty much covered everything from why are so many men such utter morons to various types of courage required to walk through this world in a meaningful way.  As always, our conversation ranged from the sublime to the ridiculous.  Not a bad way to spend an afternoon, even if I did have to take an IV pole with me everytime I had to pee.

Once my oxali was done, Nan hooked up my 5FU infusion pump and we were out of there at 3:30, just in time to escape the rush-hour traffic.  Instead of stopping to eat, we decided we'd just hit the road (and get junk food when we stopped for gas-my favorite plan).  It was still very cold and I got my first taste of one of the more common (but new to me) side effects of the oxiali--sensitivity to cold.  As soon as we walked outside, my lips turned completely numb.  It was very weird, but went away as soon as I got inside again.

Another similar side effect makes it difficult to drink anything cold-it gives me a very weird sensation in the back of my throat-not painful, just odd, like very cold bubbles filling my throat.  So it's more room-temperature water for me (yum--not).  I'm also experiencing some numbness/tingling in my hands, making typing a bit of a challenge.  My favorite (hahaha) side effect so far is the increased hot-flash frequency (not to mention temperature; think "surface of the sun").  But if it works like last time, all this will go away within the week.

Back on the interstate we saw a beautiful sunsent, and the deer once again stayed put.  Any day where you get to actually watch the sun both rise and set is a pretty good day in my book, and I was home in time to supervise bath and bed, and spend a little time in between with my boy.  Mama is here to watch out for me and for him if need be, and we stayed up way too late visiting (plus lousy sleep for me), so I'm very tired this morning and am probably headed for a nap in a bit.

One more round of chemo in two weeks, then on 1 March I have CT scan and an appointment with Dr. Big Dog to discuss the next step.  I'm moving right along!

Howling at the Moon

It's way later than I need to be up but I'm not sleepy.  I can see the half-moon out my office window, shining through the bare tree branches.  Today has been a roller-coaster day and I find myself on the edge of tears here at the end of it, an inevitable reaction, I suppose, to the high-flying glee I felt earlier.  But it surprises me, nonetheless.

I'm having a lot of trouble adjusting to life after surgery.  As pissed as I am about the cancer, I'm finding it much easier to deal with than the goddamn ostomy, and some days--today, for instance--it seems like way too much of my attention is focused on that hated thing.

I don't look sick, mostly I don't feel sick, and I can tralala along and forget that I do have this disease for awhile--until I have to deal with the ostomy, the outwardly visible sign of illness.  Yes, I know I should be grateful, that without it I'd be dead, bla bla y bla.  I am grateful to be alive.  I am not particularly grateful that part of the cost of being alive is having to wear an appliance (yes, that's what they call them) for the rest of my (hopefully very long) life.  I mean, honestly, isn't stage IV cancer cost enough? 

Thirteen Ways Life is Getting Back to Normal

1. I went shopping on Monday.  Finally I have some jeans that don't fall off and some yoga pants that fit, too.
2. Also, new shooz!
3. The music is back.
4. My junk-food jones has returned with a vengeance.  Yesterday I ate both potato chips and Cheetos, plus TWO little two-bite brownies, for crying out loud.
5. Coffee tastes good and feels necessary.
6. I'm able to scrub my bathrooms.  This doesn't sound fun, but it's better than the alternatives, which are living with the mess or asking someone else to do it (thanks, D and S).
7. Liam feels secure enough to bitch about having to do his homework.
8. Wilmington drivers again annoy the crap out of me.  See that little lever?  It's a turn signal, jackass-use it!
9. My To-Do List has stuff on it that's entirely unrelated to doctors, hospitals or cancer.
10. My whiteboard once again looks like John Madden's telestrator.
11. I'm actually contemplating going to the gym.
12. In a fit of insanity, I am allowing Liam to have his very!first!sleepover! on Saturday.  We aren't sure that his friend will actually stay all night, but they both seem determined to give it a shot.
13. I'm procrastinating instead of working.

Losing My Chemo Virginity

Tuesday morning 6:00 AM and we're off for Chapel Hill for the first part of TL's Big Adventure, getting a portacath installed.  Mine is no ordinary port, it's a PowerPort, which means they can do all sorts of groovy things like draw blood, give me drugs and inject dyes for scans.  The procedure was easy enough, since I was sedated, but after the drugs wore off, well, OWIE.  But I survived and it's getting less tender every day.  And since I have tiny rolling veins, this will be a godsend as I get deeper into my treatment regimen.

We spent the night with my friend Paige, who lives fairly close to the hospital and who basically said mi casa es su casa.  And a fine hostess she was, not only cooking us ham and eggs and biscuits for breakfast (and believe me, it's a treat when someone else makes me breakfast), but even providing us with a beautiful snowy morning!  Mama was not as happy about the snow as she was the biscuits, but we were able to leave late enough in the morning to miss most of the fender-benders that littered the bridges.

The whole day was pretty painless.  I saw Dr. Big Dog for a minute and his PA for a bit longer.  I got to visit a bit with my favorite nurse and get my next two treatments set up (plus a mammogram, since it's time and I'm going to be there anyway).  I got blood drawn from my handy-dandy port and got to visit with that nurse for a bit, then it was time to go upstairs to the infusion room, where Jerome tucked me under a blanket and gave me a handful of anti-nausea pills and hooked me up to a hydration IV.  After about a half-hour, he came in and started the bag of oxaliplatin and explained the more common side effects.  He's a good nurse--he has a great sense of humor (ie, he laughed at my jokes) and he knew his stuff.

I had packed my little chemo bag of things I thought I would need or want close by.  Of course it weighed half-a-ton and the bag wasn't quite big enough, but one of the benefits of being a patient is that sometimes you get schwag, and mine came in a great big blue bag that will most likely be what I tote from now on.  Also included were a neck pillow, a great water bottle, a thermometer, a nice pen and a treatment planner, which really appeals to the organizer geek in me.

Of course, I also got tons and tons of written information, both in the schwag bag and in a Great Big Book of Everything, colon cancer edition.  I keep peeking at various pages when various weird stuff happens, since naturally everything weird that happens from now on will be blamed on chemo.  And it's not just me doing it, either.  I've had the hiccups half-a-dozen times today; Liam says that hiccups are caused by chemotherapy.  He could be right, you know?

After a couple of hours, I got Part Two of my treatment, 5FU, which is administered through an infusion pump that came home with me.  It takes 46 hours, and then tomorrow at 1:00 a home-health nurse will come and disconnect it and take it away.  After that I can take the advice that Jerome shared with me from one of his patients, who told him, "when I'm here, I have cancer.  The rest of the time, I just live my life."

Just living my life.  Sounds like a fine way to go through treatment, doesn't it?

And So It Begins

This is the week I begin my chemo.  I am alternately freaking and quite serene, but mostly I'm just ready to have the first treatment behind me so I'll have some idea of how it's going to affect me.  Everything I've read and heard from folks who know these things tells me that nowadays chemo side effects can be managed much better than in the past, and I'm holding fast to that.

On Wednesday I will go to Chapel Hill to have a portacath put in.  I will be sedated, and when I wake up I'll go spend the night at a friend's house, then return to the hospital the next day for my treatment, then return home.  My treatments will be given once every two weeks, then after awhile (I think eight treatments), I'll have another PET scan to see how everything is looking.  My mother is driving me up this time.  She is still not convinced that I'm well enough to do things like drive myself long distances, and it's easier to agree with her than to try to change her mind.  And who knows?  She could be right (don't tell her I said that).

Last week I was looking into the possibility of joining a clinical trial, but while reading over the 22-page consent form I saw that one of the side effects is the possibility of bowel perforation, which pretty much made it a no-go.  Maybe another one will come along; I've told Dr. G that I'm willing to try anything he thinks I need to do. 

So tomorrow I'll make a couple of mix CDs, put new batteries in my Walkman, make sure I've got plenty of music and plenty of reading material and run a couple of errands so I won't have to do them when I get home.  I'm supposed to go on a field trip with Liam on Friday and I'm planning on feeling just fine, but apparently the gods aren't all that interested in my plans, since it sure as hell wasn't in my plans to have cancer, so I'm adopting the motto of expecting the best and planning for the worst.  I'm feeling very loved and supported and very strong; an unexpected weekend at the beach was a pure gift, and the best way to start this week that I could imagine.

Wish me luck!

Good News from Dr. Big Dog

First of all, let me say that I am very impressed that this WORLD-RENOWNED doctor called me himself.  And he said that my PET scan looked very good, that there are only two spots in my liver and that there was unanimous agreement at the big meeting today that this can be treated very aggressively and they are confident it will be successful.  So a few rounds of chemo, then another scan, then we'll see if surgery is necessary.

He also said that a lot of the stuff that the surgeon saw when he operated is not showing up on the PET scan as anything to worry over, and that his opinion is that when I had the surgery there was still a ton of infection, perhaps from a small perforation in my colon.  Now, after two weeks of constant antibiotics in the hospital plus this time to heal, everything that was so inflamed, etc., is back to normal.

I will go either late this week or early next week to have my portacath installed and then I can have my first treatment.  I'll have to spend the night this time, but probably not every time.  Also, he is sending me literature in re a clinical trial that he wants me to think about.

YIPPPEEEEEE!!!!!!!

Resurrection

This poor little journal has been cast aside for more than a year, due mostly to the fact that I got very lazy about going to the gym and there was nothing about which to write.  I did manage to lose 25 pounds, but it was not a diet plan I'd recommend to anyone; I call it the Life Implosion diet. 

Now losing weight doesn't seem to be anything I'm going to have to stress over.  Due to my long hospital stay and the reasons behind it, I've lost 20 more pounds and am being implored to eat more, eat more.  My appetite is finally returning, and I'm under strict orders to eat as much of everything as I can, in order to regain the nutritional health that was lost before my surgery.  Rebuilding my strength is very important as I begin the fight of my life -- for my life.  So it seemed fitting that I resurrect Chrysalis as a place to write about my journey back to health.

Thursday was my first meeting with my oncologist.  He is terrific and I am so blessed to have him leading my team.  After looking at my CAT scan he believes that surgery to remove the spots in my liver is a real possibility, so he asked me to return yesterday and have a PET scan.  He will present my case at his regular surgery/oncology meeting on Monday and I'll know soon if I'm going to have the surgery first, or if I'll start chemo first. 

Although I was really suprised to hear surgery mentioned as an option (not to mention a little freaked out), it was very exciting news.  Stage IV colon cancer is very difficult to cure; having the liver involved makes it even more difficult.  But if the bad places on my liver can be surgically removed, my chances of a cure are much brighter.