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Thanks for sharing my adventures here.  In the interest of better functionality and easier subscriptions for blog followers, I've moved this blog to its own site at www.mysemicolon.net.  Come on over there to read and follow along.  Thanks!

Eleanor, Gee, I Think You're Swell

I'd like you to meet a friend of mine.

This is Eleanor.

She's been living with me five days a week for the past month and a half.  When I first came home with the pump, I was trying to think of a way to make the experience a little bit less disturbing for my kids, and so I said, "Hey, this pump is going to be around for a while.  Let's give it a name!" thinking that they'd come up with Pumpy or Zappy or something, but instead my six year old daughter said, "How about Eleanor?" just to be silly, and it stuck.

I carry Eleanor and the bag of chemo meds in a little fanny pack and try not to get anything caught on a doorknob or faucet handle.  About eight feet of tubing runs between Eleanor and the chemo bag, which means I can hang the whole contraption outside the shower if I need to, or put it on the floor next to my bed, or just fold it all up and push it into the carrying bag.  One end of the tubing is connected to my port via a needle like this:

It looks sort of horrible, but honestly, it hurts less than most injections, and once it's in, I don't feel it at all - remember that the portacath is like a little drum, and the needle goes into the drum through a silicone membrane, so the needle is sitting inside that, not just sticking into me.  There's a foam pad between the plastic needle assembly and my skin, and then there's a gauze bandage over the whole shebang to ensure that it stays in place all week.  The blue plastic valve in the upper left of this picture is the spot where nurses can connect the long tube that leads to the pump, or can connect a syringe to draw blood, flush the port with saline, give me a smaller one-time dose of meds, etc.  So after I get stuck with this needle on Monday mornings, that's it for the rest of the week, even for blood tests on Friday.

I'm happy to say that Eleanor will be going on vacation tomorrow when my five and a half weeks of continuous infusion are finished.  Once she leaves, I won't see her again until some time in June, when Round Two of chemo starts.  For those infusions I'll have her for only two days every other week.  Eleanor is one of those friends who can be a bit difficult to tolerate at times, but in the end I do appreciate what she's done for me.

In the mean time, I hope I can get the Turtles song "Elenore" out of my head.  (Go ahead, click on that link, because you shouldn't miss the spectacle of Sixties hair and fashion therein - and then the song will be stuck in your head, too.)

This Is Your Brain on Chemo

It turns out there's this very real phenomenon that people call "chemo brain."  It feels a great deal to me like what my friends and I have been calling "Mommy brain" for the past few years: a general sort of fogginess, a sense of fatigue, and an inability to concentrate.  According to this 2009 article from the New York Times, some cancer survivors experience these symptoms, and much more serious ones, for months or years after their treatment is finished.

I'm not completely unable to function yet, but this sure does feel real to me.  There are days when I just can't quite remember how to complete a sentence well (some days these blog posts take a ridiculous amount of time to complete), and more often than not, I'll find myself intrigued by a newspaper article only to decide a few paragraphs into it that I'd better come back later on when I don't feel so tired and foggy.  Sadly, that "later on" never seems to come, and so lately I've found myself starting all these interesting reads and failing to follow through.  I can talk for twenty seconds about lots of great stuff; just don't come to me if you want to hear the punch line.

Part of me is not surprised by all this.  After all, chemotherapy drugs are basically poison (remember my post about the biohazard warnings?).  They kill a lot of cells, so it stands to reason that one wouldn't get through all this with other functions unscathed.  Still, I'll admit to being a bit nervous about what I'll be like a year from now, after surgery and four full months of much more intense chemotherapy under my belt.  I hope I can still remember my name.

In the mean time, I'm slogging my way through it.  I feel the way I did in junior high when confronted with an algebra problem for the first time.  I recognize some of the symbols, but I just can't quite put it all together.

Feeling Like March

Here I sit, on the eve of the final stretch: one more full week of chemo/radiation to go, plus one last zap on Monday, March 14, and I'll be finished with this phase.  Whew.

It's a good thing it's winding down, too, because with one week to go, I'm finally starting to feel like a cancer patient - but just a little, so don't panic.  The past month has been much easier than I expected it would be.  I've had just some minor fatigue and the occasional bout of nausea, all effects that appeared and waned within a couple of hours every time.  But not this weekend.  Yesterday, I started to feel pretty sick in the evening, and that lasted into the night.  Today, I feel like the weather.  It's warm out, but it's also rainy and gray and muddy, and just...blah.  I don't feel violently ill; I just feel worn out and vaguely queasy and not quite right.  March isn't coming in like a lion.  It's coming in like a giant slug.

So if you see me during the next week, I may look like Charlie Brown, but I'm OK, even if I don't quite respond to your greeting or don't seem as if I'm all there.  I don't need anyone to worry or to rush to take care of me.  You've all left us with a freezer full of good food, and the kids' schedule is more or less set with the help of some good friends.  Just understand if I'm a little...vague for the next few weeks.  The nurses tell me that the side effects will most likely fade by the end of March, at which point I'll be very happy to move on to a stretch of what feels like normal life for a while.

I still think a few weeks of "bleah" is a small price to pay for survival.

A Gold Star For Me!

First of all, allow me to brag a little.  My oncologist told me today that the consensus among my care team is that I'm their favorite patient.  This would be a little more exciting if they had produced a sticker or a pin or something (my kids won't buy it without some tangible evidence of an award), but oh, well.  I'll take whatever accolades I can get. :)

Now, on to the details.  Today was Day 19 of 28 in this chemo/radiation phase.  I can see the finish line, and it looks great.  Fortunately, I'm feeling better today than I have in the past couple of weeks, so I feel like I can make it through the rest of this without too much effort.  I've also got some milestones to look forward to down the road.  Monday, March 14 is my last radiation treatment.  Wednesday, March 31 will be the first in a series of powerful moments of truth, when my surgeon will take another look...well, you know where, to see whether all this zapping has produced any results.  I have visions of the tumor being virtually invisible, perhaps reduced to scar tissue, and until or unless he tells me any differently, that's what I will expect.  This will not give us any conclusive answers about the full extent of the cancer, because the only way to figure out what's going on in my lymph nodes is to take some out and test them.  But it will help determine whether I've responded to the chemo/radiation on any level at all.  After that, I've got surgery booked for Monday, May 23.  I originally thought it would be about 6 weeks between radiation and surgery, but apparently there are some recent studies suggesting that a longer interval allows the tumor to continue to shrink and reduces the risk of local recurrence (for those of you who think you'd enjoy reading the Journal of Gastrointestinal Surgery, you can check out the results of one study here).  So 10 weeks it is.

That feels like a long wait, but the more I think about it, the more I like the idea.  Ten weeks is a long time; I can use it to enjoy the beginning of spring, to work really hard on eating healthy and getting back into decent running shape so that I'll be extra strong before surgery, and maybe even to take a vacation with my family and enjoy some time with them while I'm not feeling all squiffy from chemo.  Because "chemo brain," in my experience, is a real phenomenon.  More about that later.

The biggest obstacle I've encountered in the past few days is an angry looking rash around my collarbone near my port site.  Not a sign of infection around the port, but an apparent allergic reaction to some adhesive tape I used to try to cover the port with a plastic bag so I could take a decent shower.  Annoying, but also a really good thing, because if it turns out I have an allergy, it's better to know that before my big surgery.  My oncologist says I'll need to do my best to remind the OR staff about the tape allergy repeatedly, up until the moment I go under.  My mom, who's a nurse, suggested that I could write "ALLERGIC TO ADHESIVE TAPE" on my forehead just to be safe.  I'll take that under advisement.

I have much more to say about chemo brain, about the uncertainty of all this, and about affordable health care, but the Benadryl I took to combat the adhesive rash is kicking in...

Rock On

You may be wondering about the photo in this blog header - what's with the rocks.?  Those rocks are in one of my favorite places in the world - a little cove in Acadia National Park called Hunter's Beach:

In addition to being beautiful, it's incredibly serene, because as the waves move over the beach full of those dinosaur-egg-shaped pieces of granite, they clink against each other.  It's a lovely accent to the sound of the surf.  My kids love this beach; they've spent hours playing with the rocks, stacking them up, tossing them back out into the waves.  Those rocks represent peace and safety to me, and that's why they're up there in the header.

When I'm officially declared cancer free, I'm going to Hunter's Beach.  I have a "touchstone" - a small rock that I picked up in the Healing Garden at MGH (don't worry, I'm not dismantling the garden; the touchstones are there for patients to take).  It fits perfectly in my hand, and I keep it in my coat pocket, so that I can hold on to it every morning as I walk to treatments.  At the end of this journey, I will take the touchstone with me to Maine, and I'll throw it into the ocean. 

And with it, my worries will be washed out to sea.

I Am Not the Cowardly Lion

Quick update for family and friends: Still alive.  Still feeling more or less fine, just very tired and a little sore from radiation.  Oh, and whoever's rocking the boat, STOP IT so that I can get rid of the seasickness.  Thank you.

Now: today's thoughts.  I am officially past the halfway point in the first of 3 treatment phases.  16 out of 28 days of radiation therapy are done, and after my chemo pump is disconnected tomorrow, I will have only two more Monday hookups, after which my friend Eleanor (the kids' name for my constant companion) will be retired.  While I appreciate what she's done for me, I will bid her a fond farewell.

It's been interesting to me to talk to some other patients this week.  A few of us are feeling a bit sheepish about comments from people who tell us how brave we are.  I mean, yes, this is scary stuff and all, but the patients have the easy part - all we have to do is show up.  I don't feel particularly courageous right now.  Courage is what we're seeing in Egypt and Bahrain and Libya and Wisconsin (there's a strange list for you, eh?).  Courage is a mother in Haiti who holds her baby while doctors amputate a limb without anesthesia.  Courage is a woman from the Congo  who shares stories of the horror she has survived and then moves forward with her life.  Courage is a family in New Orleans leaving everything they have behind to get out of the way of Hurricane Katrina.  In comparison to all that, I'm doing pretty ordinary stuff.  And I don't have a choice.   So please, no medals for courage for me from the Wizard of Oz.  The only "brave" choice that I have made here is to maintain my determination in the face of bad news, but all of you have made that very easy for me.

And to further convince you that this experience is not all bad, here's the view I have every Monday morning while I wait for my chemo hookup.  The infusion unit is on the 8th floor of the Yawkey building at MGH, and faces the Charles river, looking out towards Cambridge.  I'm looking forward to the transformation of this scene as spring arrives.

Boston is a lovely place.  Another one of the unexpected gifts of this experience is the fact that I get to spend so much time in the city, something I haven't done enough in the past few years.  Some mornings, when I arrive early or have time to wait for a train, I walk around Beacon Hill for a while.  It's not a bad way to spend 30 minutes of your life.