Chrysalis

Teach Your Children

After my initial consultation with Dr. Big Dog, I decided that I needed to sit down with Liam and explain to him what was going on.  He had had a really hard time with my extended hospital stay and I knew that there were days ahead where I would be away from him again.  So I bit the bullet and sat him down before I went back to Chapel Hill for my PET scan.

Telling your almost-eight-year-old son you have cancer is not something that is regularly covered in the parenting books; there is no What To Expect When You Expect Chemo.  Liam is a very bright child, and he is also a worrier.  So I knew that the way I framed this conversation was going to set the foundation for how he dealt with things in the months to come.  In many ways this was probably one of the most important conversations I'll ever have with him.  I didn't know what to say, I only knew that I had to be honest with him. 

So I just said it flat-out, "Mama has cancer."  Then we talked about what cancer is and how it affects your body, and the things that had already been done to kick the cancer's ass.  I explained to him about chemo, reminding him that his first-grade para-teacher had gone through chemo last year, and that she was still able to come to school and be his teacher.  I told him that my doctor was very, very smart and knew all kinds of things about how to treat cancer, and that my job for the next several months was to listen to what my doctor had to say and to follow his instructions so that I could get well.

He cried, of course.  He said, "I wish this had never happened!" about a million times-his mantra against bad, scary things (he repeated it endlessly in the ER the day he broke his arm).  I cried a little too, and we both agreed that this was very scary and sucky, but I assured him that I was going to do everything the doctors told me to do so that I would get strong and well again.   

I thought he was handling it well, until last week when I returned from Chemo No. 2.  Mama had come to meet his bus while I was in Chapel Hill, and she planned to stay with us for a few days until I felt ready to be here alone with Liam.  We are so fortunate that my mother is willing and able to come stay, but Liam was very resistant to her doing anything for him; he wanted me to do everything, even things he could do himself.  He loves her to pieces, but he was not very kind to her while she was here, which was my first clue.

Then came the call from his teacher, who said that all week he was coming in complaining of being tired, not wanting to participate in class, putting his head down on his desk.  She was finally able to get him to tell her that he was tired because he couldn't sleep at night, that he kept waking up because he was "worried about Mama."  Do I even have to tell you how my heart broke when I heard that?

I didn't want to jump right into it with him because I want him to continue to confide in his teacher, but he took the decision right out of my hands when he initiated the conversation and told me the same things he had told her.  He also told me that he likes Grandma to visit, but he doesn't want her taking care of him or me, that we can do it ourselves.  I explained to him that I was Grandma's baby just like he was my baby (even though neither of us is a baby), and that she wanted to take care of me so that I could get strong and take care of both of us again soon.  He agreed, but very grudgingly, to let Grandma help us when I needed it, but was very clear with me that he didn't like it.

He stayed home from school yesterday and really wanted to stay home today, too, and a little judicious digging uncovered the fact that "it's hard to be at school when I'm worried about you."  So we talked about how the best thing we can do right now is lead our lives as normally as possible.  I told him that this week I felt really good and strong (a bit of an exaggeration, but that's okay), and that I was going to spend the week doing what I need to do, and that I need him to do his job, which is to be a little boy who goes to school and learns cool stuff and plays with his friends.

Clearly this will be a continuing dialogue, not a one- or two-time conversation with him.  With so much of what will happen still unclear, it's hard for me to talk with him about it.  All I can do is listen to his fears, hold him close when he cries and be honest with him when he asks questions.  It doesn't seem like enough, but it's what we have now, and will have to suffice.

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.

Wednesdays with Vlad

Tonight it was back to the class led by Vlad the Impaler.  I laughed my head off when I saw that only one other person from last week came back, but we had three others join us, so it was good.  Vlad switched the order of what we did so that this week we went from top to bottom (muscle groups; get your minds out of the gutter).  I found that a little bit easier to do.

Not that any of it was easy, but it wasn't as scary or as grim as the first one.  Also while I worked really hard, I didn't have the scary pounding heart of last week that forced me to sit out one whole circuit. 

Having such a small class meant everyone got individual attention, too, which is helpful.  Vlad knows his stuff and he is in amazing shape.  He also told me that he teaches basically this same class at other times, too, so I'm going to try to hit it at least one other time during the week. 

The class he teaches before mine is a kickboxing class and it looks like so damned much fun.  I don't think I'm quite ready for it yet, but that's my goal.  I would probably not be nearly as much of a mean girl if I was getting my yayas out by kickboxing.

Really.  I mean it.

OwOwOw

Lord have mercy, do I ache today.  Whatever those muscles are in the front of my thighs?  Ouch.  I mean, really, ouch.  I'm feeling it in my abs and in my upper arms a bit, too, but my legs, oy vey.

No gym today, but I walked a fair amount, mostly because I had to or risk permanent crippling.  I haven't been able to figure out a way to sit at my desk that doesn't make my hamstrings tighten up, so if I don't get up and move around fairly often I really pay for it.  I stretched my errands out so that I could do some walking around, too.  I would like to say it helped, but honestly I'm not sure.

I can't imagine how in the hell I'm going to walk around the lake on Saturday (3.5 miles).  The notion of it makes me want to cry.  Hopefully tomorrow I won't be quite as sore, and if the weather holds I'm going to try to get in the pool for awhile.  I think moving through the warm water in the cool evening air will be really good.