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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.

It's Not Easy Being Green

OK, the time has come for me to cut back on the "I'm really fine with all of this" act for a bit.  In the big sense, I am fine.  I go to the hospital five days a week and see all kinds of people who are clearly suffering more than I will at any point in the next year.  Last week, I walked past a beautiful young girl in the hall.  She was on crutches, and I wondered whether she'd broken her leg while skiing...and then I looked and realized that she had only one leg.  I don't imagine that will be an easy thing to manage as she navigates through the storm of her teenage years, which are so volatile for young women who often think their perfectly whole, functional bodies aren't good enough.  Then, a few days ago, I met a man about my age in the radiation clinic waiting room.  He had a surgical scar running across his head.  He was feeling bad because he hadn't been able to spend time with his 7 year old son, who had a bad stomach virus.  Because the father's chemo regimen compromises his immune system so much, he had to actively avoid his child and the virus, and it was clearly breaking his heart.  He told me that he's worried about how little time he has left with his son; losing a week now felt like precious time was being stolen from him.

Things like that make it very hard for me to feel sorry for myself.

I will say, however, that I've reached the point where I can't really pretend that cancer treatment isn't a big deal.  It's still not anything close to debilitating; I'm able to do most of the things I need to get through a day with no trouble.  But I am tired now, and it's not the kind of fatigue that goes away after an afternoon nap, it's the kind that makes me look up to try to spot the truck that ran over me.  The restrictions on my diet are expanding a bit, too.  I knew I'd have to avoid sushi and runny cheeses and all those foods that are off-limits during pregnancy.  Now I've got to be careful about high-fiber foods and raw vegetables and greens and anything with lots of spices, lest my digestive system balk at the challenge and make me feel really nauseated or...worse.  So that really good eggplant dish with cayenne and turmeric that I made last week will have to wait for me in the freezer, and I have to feed my beautiful rainbow chard to someone else while I focus on nice bland foods.  Not that I don't love mac and cheese and mashed potatoes as much as anyone.  But I find it quite ironic that I'd finally reached the point in my life where I would happily eat my vegetables, and now the diet the nurses recommend is what I loved most when I was five years old and wouldn't touch anything green.

Bland foods aside, the big problem for me right now is that I can see how all this affects my family, and I hate it.  I don't want them to have to struggle through this.  I don't want to have to tell my kids that I can't play with them because I'm too tired.  I don't want to tell my husband that I can't make some meal we both love because I feel sick to my stomach.  I don't want to ask all of them to give up some activity or to take on all kinds of extra responsibilities when they'd rather not.  I know it's part of the deal here, and in exchange for all of this I'll get to live, but it makes me angry.

So there you have it.  Today, I'm quite literally sick and tired.  I'm not happy about it.  Tomorrow will be better.

What About Everyone Else?

One of the things that has made the strongest impression on me as I move through this process is the fact that a serious illness affects so many people.  Yes, I'm the one who is sick (it still feels very odd to say that when I feel perfectly fine), but I'm not the only one who has huge challenges to face.  In a way, I think that cancer patients have it easier than their loved ones do.  We have the physical discomfort and some fears that are unique to us as patients, but our spouses, parents, siblings, children, and friends have to stand by and watch - and wait.  I think that's got to be the hardest part.  Uncertainty is no picnic.  I'm not having too much trouble right now with the idea that I don't really know what my outcome will be, but that's because I have some task to focus on pretty much every day.  With radiation 5 days a week and the infusion pump, two checkups a week with different doctors, emails from the support team (nutritionist, social worker, etc), I've got a lot to keep me busy.  And most of it feels like time spent productively because it represents one more step towards a cure.

My husband, though, has to try to continue to navigate his "normal" life at work, and then on top of that has had to take on more responsibility for managing the kids, more household chores, and all kinds of new worries that he couldn't have imagined a few months ago.  And while I get to be an active participant in all my medical appointments, he has to be a spectator.  I'm pretty much a control freak, so I know that role would be incredibly frustrating for me.  So far, he's handling it all beautifully.  That doesn't mean it's ever going to be easy for him.

My mother, too, is in that frustrating place.  She's a nurse, so she has the (dis)advantage of really understanding some of the technical details of my situation, and to complicate matters further, she's been through all this before with my dad.  I can't tell you how angry I felt when I first got my diagnosis - not on my own behalf, but because it felt so colossally unfair that my mom should have to go through this ordeal a second time in her life.  Of course, there's much more to be optimistic about this time around, and I remain convinced that I'm going to be fine.  Cancer treatment is not what it was 35 years ago.  Still.  Medicine may change, but people's feelings are what they are, no matter when they come up.

My children.  I don't even know where to start with this.  Of course I understand a lot of what they're feeling, because I've lived it.  I'm glad I have that understanding, for their sake, but even so I won't ever fully know what's going on in their minds.  I've just received a copy of what looks like a really nice DVD that features kids talking about their experiences with parents who are cancer patients, and I think it might help a lot of families.

I watch all these people around me work so hard to help and support me, and I worry about them.  But I'm also overwhelmed as I learn about all the resources that exist to help all of us through this process.  Good hospitals include psychologists and social workers as part of a patient's care team, and I've already met a couple of pretty fabulous people at MGH.  If you are a patient or caregiver and haven't had that experience, there are still plenty of places to look for help.

The Colorectal Cancer Alliance has a page dedicated to friends & family of cancer patients.  The National Cancer Institute's page on "Caring for the Caregiver" summarizes some of the challenges that families face in a very basic way - it's a good starting point.  I can't say enough about the wonderful program at Mass General on Parenting at a Challenging Time (PACT), which offers help to families affected by cancer and also to military families as part of the Home Base Program in Massachusetts.  There's a list of good resources for caregivers here at Cancervive.  The American Cancer Society's support system is also quite extensive, and offers services for everything from transportation to lodging for families who have to travel for treatment to help navigating the nightmarish maze of insurance coverage.  I have a lot to say about what happens to people as they try to figure out how to pay for all this, but that's a separate (and probably very, very long) post.

Biohazard

Today's topic: chemotherapy.  A miracle for cancer patients.  Also, as it turns out, poison.

When I went in to the infusion room for my first chemo hook-up, the infusion nurse handed me a sheet with information about how to troubleshoot the portable pump, a sheet with information about 5FU and its possible side effects, and a cleanup kit in the event of a leak or spill from the infusion bag.  The kit includes instructions about how to manage a spill: wear two pairs of latex gloves; wipe up the spill with two sets of superabsorbent pads; wrap the gloves and pads in a yellow biohazard bag; double seal the bag before disposal; do NOT, under any circumstances, allow anyone's skin to come into contact with the chemotherapy; if it spills on your clothes, wash the clothes immediately in hot water, separate from any other laundry; if someone does have skin contact, call poison control, and so on. With these dire warnings, all I can think of is the "2319" alert from the Pixar movie "Monsters, Inc."



And yet this terrifying toxic brew is being pumped directly into my bloodstream. Such a strange thing to consider. I wouldn't be surprised to turn around and see monsters in their biohazard suits rappelling down from the ceiling.

As for the side effects, it's been just under 2 weeks since I began my adventure with 5-FU, and all in all it's been pretty easy. I'm tired (which is more likely an effect of the radiation than the chemo), and today for the first time I'm having some nausea. It's not debilitating. I've had worse experiences on roller coasters and boats, and during early pregnancy. I finally decided to take a Compazine this afternoon, and while it doesn't eradicate the nausea completely, it does take the edge off it. The best way I can describe this feeling is to say that most foods, even things I really like, don't seem too appealing at the moment. That's an unfortunate development, because eating is something that I do quite well, but I take comfort in the knowledge that this is a temporary situation. Most people who know me know that I'd prefer to manage this without relying too much on additional drugs, and I'm happy to report that peppermint tea and ginger seem to help as much as the Compazine, at least at this stage.

The other most common side effect of 5-FU is mucositis (otherwise described as - yuck - mouth sores), and so far I'm not facing that one. Apparenty baking soda or saline mouth rinses can combat that one, and I found this alcohol-free mouthwash that I like very much.  Hair loss will not be an issue with this drug - thank goodness, because I look truly ridiculous in hats.

So far, so good.  It's funny that the cancer itself doesn't cause many problems in the beginning; it's the treatment that makes you really sick.  But I'm not going to complain.  Well, yes, I probably am, but not too much.  All this really does parallel the experience of pregnancy in many ways.  It will take about 9 months to get through the process.  I'm going to feel queasy and exhausted, and I'll have all sorts of undignified aches and pains in, er, delicate areas.  The exams and treatment will require me to suspend any sense of modesty.  The whole process will be messy and uncomfortable and sometimes terribly unpleasant.  And in the end...life. 

Sounds like a pretty good deal to me.

This Could Happen to You

It's now been just over a month since I heard a doctor say to me, "It's probably cancer".  I feel like my world has turned upside down in that short time, but I also know that I've learned a lifetime's worth of valuable things in those few weeks.  The most surprising thing has been this: a cancer diagnosis is not necessarily a death sentence.

The American Cancer Society estimates that 1 out of 3 Americans will be diagnosed with some form of cancer during their lifetimes.  That's a lot of people.  And while it's a grim statistic, consider this: the 5 year relative survival rate in the U.S. for all types of cancer is something like 66%, and continues to improve (that includes all types and stages of cancer, and doesn't account for other illnesses or differences in behavior/environment that may affect health).  So while an awful lot of people have cancer, a full two-thirds of them will survive it for quite a while.  Granted, there are still far too many deaths from this disease, but it's not quite the nightmare we often assume it will be.

When I first got this diagnosis, I started to think about how awful it would be when I died an untimely death and left my young children behind.  I think most of us, whether it's because of the sad stories we see and read, or because of a personal loss, believe that a cancer diagnosis means this is it - life is over.  I don't believe that any more.  I have heard more stories of survival from more people than I could possibly have imagined, even from people whose diagnoses were pretty grim at first.  The oncologists treating me have all said forthrightly that they're very optimistic about the success of my treatment.

While I was pleasantly surprised to learn that none of my doctors are yet worried that this thing is going to kill me, I've been equally surprised that the treatment, so far, isn't so bad.  Granted, I'm still in the early stages, and the road ahead is long, but two weeks into it, I can still honestly say that I feel good.  No significant side effects from the radiation/chemo yet, other than a creeping fatigue that's starting to appear.  I expect that to increase, but not to become debilitating.  I won't lose my hair and I won't necessarily suffer from terrible nausea with this particular chemotherapy drug (which is Fluorouracil, or 5-FU, if you're wondering).  I've seen dozens of other patients in the radiation oncology and chemo infusion waiting rooms, and while a few of them are clearly tired and frail, most of them look pretty ordinary.  When people wait together with friends or relatives, sometimes I can't tell which person is the patient.  I take that as a good sign that cancer treatment doesn't have to be debilitating.

So here's the thing.  A lot of people have cancer.  A lot of people are living with it.  A lot of it is preventable, which is a topic for another time (but I'll say one more time: if you've been putting off a mammogram, a colonoscopy, a Pap smear, a prostate exam - make an appointment NOW).  One day, you may face this yourself, and if that happens, don't panic.  You may be in for a rough road, but you will almost certainly meet someone else who's already traveled that road and can help you along.

And when you're finished, and well again, you will appreciate life in a way you didn't before.

At the Starting Gate

I feel pretty good tonight, because something is finally happening to move my recovery forward.  Day 1 of treatment is complete!  My first radiation treatment was, as I expected, quick and painless; a breeze (though I do still need to get over feeling a little self-conscious about lying there with all kinds of people staring at my rear end - I suppose my sympathy should be for their feelings, not mine - I don't have to put up with their view).

Next trick was the removal of the dressings around my new port and the first chemo hookup. I'll admit to feeling pretty apprehensive about that...the idea of someone stabbing at the spot with this still-healing incision wasn't appealing. I decided to take a very deep breath and trust the nurse.  Once again, I was pleasantly surprised by how easy and comfortable it was.  Removing the surgical dressing hurt a whole lot more than the needle insertion.   Now I have to get used to lugging around a portable pump, which makes a little whirring noise every minute or so.  It took a couple of hours to get past the fear that I was going to get the tubing caught on something and disconnect the whole mess; next hurdle is figuring out how to lie in bed with this thing attached.  And then how to take a shower without dropping it, and then how to make sure the dogs don't jump on me, and then...I figure I'll have mastered living with the thing just before it's time to get rid of it.  :)

But I have no real complaints about it.  My 6 year old is not happy about the carrying bag (the pump itself is purple, so that works for her, but the bag apparently falls short in the style department).  I, however, love everything about the pump, because it's saving my life.  Every time I hear it whirr, I think, "HA!  Zapped!" and picture scared little cancer cells melting like the Wicked Witch of the West.

My overwhelming emotion today was gratitude. We are in the middle of a truly disgusting winter weather season here in Boston, and yesterday brought another huge pile of snow followed by sleet and rain this morning, creating a messy, dangerous commute today. And yet the people at the hospital who are helping me get better came to work and didn't complain about it. I tried to make a point of thanking them for it, and to tell them not to worry about delays and interrupted schedules on a day like this. It's no small thing for hospital workers, police, firefighters, road crews, and other heroes to brave the elements to help the rest of us.

OK.  One day finished, 27 more to go.  I have a lot more to say about some of the emotional challenges of this situation, but there's plenty of time for that.

Any Port in a Storm

Today was chemotherapy port placement day.  While I'm not usually squeamish about any kind of medical procedure (with the exception of everything that happens at the dentist), I have to admit I was a little nervous about this one.  Reading things like this Wikipedia entry that explain the procedure very simply, but that also mention devices being implanted under my skin with a tube running into the jugular vein and then directly towards the heart, well...yikes.

Turns out the implantation was no big deal.  So far, my experience with every nurse, imaging tech, and aide in oncology and surgery at Mass General has been great.  Maybe these people are just nicer because they know they're dealing with patients who are fighting for their lives, but whatever the reason, I've yet to feel like anyone taking care of me was anything other than professional, competent, and really caring.  I even got a hug from one of the older nurses as I was leaving the OR today (well, as much as a hug as you can give someone who's strapped down to a table and who's kind of loopy, but still).  The radiologist who put the port in was straightforward, respectful and encouraging.  Once again, thanks to some lovely sedatives, I felt absolutely no pain.  I had an IV with some antibiotics, got snugly tucked in to a table with lots of sterile drapes and warm blankets, and then had some really weird half-dreams while I was under sedation (yet was also somehow conscious enough to understand what the doctor was saying as he explained what he was doing and when - not sure how that works, or if I imagined the whole thing).  I was a little loopy and seasick from the sedatives on the drive home.  Now, about 8 hours later, the port site and the right side of my neck are a little sore, but there's no sharp pain.  It's about the way you feel if you have a bad bruise, or have pulled a muscle lifting something the wrong way.  I had visions of sharp pain from bleeding incisions - not at all.  If you're about to get one of these things, fear not.  You may be achy, but for me the worst feeling right now is the itchy adhesive that's holding down these dressings.  I can live with that.

So now I'm all set for the real treatment to start.  I'll go in for a radiation simulation tomorrow (a test run with imaging but no actual "zapping," as my kids are calling it), then  a chemotherapy teaching session during which I'll learn how to maintain the port and manage my portable chemo pump, and then on Wednesday morning, the fun begins.  Bloodwork at 8:30, first chemo at 9, first radiation at 9:45.  I'm ready to start scaring this tumor AWAY.  If everything else goes as smoothly as the port placement did, this will all be a breeze.  :)

Doggone It

Cancer takes all the fun out of being cynical.

At the risk of turning into this guy, I have to say that it's interesting how much easier it is for me to feel good about the world these days.  I've said to a few people that this diagnosis is, in its own way, a gift (this is usually the point at which they get the "Oh, God, maybe it's spread to her brain" look on their faces).  But I'm sane, as far as I can tell, and also serious.  When you're faced, even for a moment, with the very real fear that you might lose everything, you realize how much you have.  And when you get past that immediate fear, it makes lots of small annoyances disappear.

Don't get me wrong - I haven't suddenly become a smiling bundle of joy and optimism.  I still find myself yelling, "JUST.  PUT.  YOUR.  SHOES.  ON." at my kids when it's taking us what feels like hours to get out the door in the morning.  And I still want to slap people who say that global warming must be a myth because it snowed last night.  But I've found myself feeling much more tolerant of things that might have made me furious a month ago, because really, how much does it matter?  It turns out that people are basically pretty nice.  When they find out you're facing something really scary, it seems like everyone offers love and support.  Not just people who know me well, old friends and relatives; everyone from the principal at my daughter's school to the clerk at the post office to a musician I'm a fan of and have never even met have offered to drop everything and help.  I find it difficult to complain when I think about all this.  I have a huge network of people who will pray, meditate, drive my kids around, run errands for me, put up with really unpleasant stories about medical procedures, whatever.  I live in Boston, where I have easy access to some of the world's best medical treatment.  We have good health insurance.  I will be OK.  Just knowing all this, without anyone even lifting a finger to do anything else, has been incredibly powerful for me.

I've never been a fan of positive affirmations and overly sentimental inspirational quotes; I've always been a little too cranky to see that stuff as anything other than decoration.  But I've stopped yelling at other drivers in bad traffic, at least.  Life really is too short.

Tom Petty Was Right

So it turns out that, after you live with a cancer diagnosis for a while, the challenge becomes wondering what the doctors will decide to do about it, not worrying about whether you'll live through it.  So, yes, the waiting is in fact the hardest part. 

I walked around for a while with a knot in my stomach as we waited to find out how to proceed.  Here's how it worked: Step 1: colonoscopy.  Step 2 (the following week): CT/MRI scans to determine whether this cancer has metastasized to any other organs, and 24 hours to wait for that answer (which was, thankfully, no).  Step 3: wait a few more days to let the surgeon consult with some other doctors to decide whether to operate immediately or start with a different approach.  Step 4, about two weeks after the initial news: meet with an oncology team to talk about strategy and scheduling.

It turns out that it's a pretty standard approach to try to shrink these kind of tumors before surgery if they have advanced past Stage 1.  Mine is medium-sized, and there are a few enlarged lymph nodes visible on my MRI images, so we're going to do 6 weeks of pre-op (otherwise known as "neoadjuvant") treatment.  I will have radiation 5 days a week, and will get to carry around a portable chemotherapy pump, which should make things interesting for a while.  I've put a moratorium on my internet reading from here on out, but the things I've seen so far make me feel pretty good.  If the tumor responds to the radiation and shrinks significantly, it looks like survival rates are comparable to those for Stage 0/1 tumors - in other words, high 90 percents.  I am choosing to believe that the radiation will zap this nasty thing away for me, and that I'll be just fine.  :)

After meeting with the oncologists to discuss the plan, I went in the next day for a CT scan to plan therapy and to get my little tattoos for the radiation itself.  Just 3 small dots, but the needles stung enough to make me confident that I will not be having anything tattooed anywhere else for now.  Next step will be having a chemo port installed.  That's a little line that's inserted under my collarbone to provide easy access for IV meds, saving my veins from constant punctures.  I'm a little squeamish about the idea of this, even though I'm not generally needle-phobic, and I remember my dad's port well (my parents taught me how to help him maintain it and even to help administer some of his meds).  Just need to get through that one.

I am feeling pretty good right now.  I'm not scared, just focused on getting this treatment started.  I feel fine physically, apart from a slightly sore rear after yesterday's poking and prodding.  I'm trying to continue running a little bit every day.  The team tells me I probably won't have much in the way of significant side effects during this 6 week stretch, apart from some fatigue that will likely hit towards the end.

Here's how I think about it.  February is pretty horrible anyway, so why not put the month to good use? It will give me something to do besides look out at the dirty old snow and feel desperate for spring.  May as well use the time to get myself better!

The Journey Begins (a long introduction)

January 14, 2011: Well.  Who would have thought I’d be here?

I am 42 years old.  I’ve never been really sick with anything other than a bad cough or the flu in my life.  I’m fanatical about good food; I have a ridiculously healthy diet.  I get a reasonable amount of exercise and have even started in the past year to think about training for a marathon.

And then, on January 7, I learned that I had colorectal cancer.  First of all - cancer?  Excuse me, but no, thank you.  I’m young and healthy and I have none of the traditional risk factors for this disease.  And second - of all the parts of the body to have to talk about, did I have to end up with cancer in this one?  Sheesh.  If humor helps with the healing process, I should be all set, because with 6 and 9 year old kids, there’s no shortage of butt jokes in this house.

My father died in his early 40s after a struggle with esophageal cancer, so in a way, I'm not entirely surprised to be facing this.  As I approached my 40th birthday, I found myself wondering whether I'd manage to sneak through middle age without cancer noticing me, but no such luck.  Still, it never really seemed like it would happen.  When I got the news, I spent about 24 hours feeling alternately shocked, terrified, and incredulous.  I started to imagine what would happen if my kids had to grow up without me.  I had horrible images of a painful wasting death in the hospital.  I waited to wake up from this bad dream.  And then, while putting my 6 year old daughter to bed one night, I realized that there’s one thing that will make me fight harder than anything else I can imagine: threaten my kids, and watch out.  If I don’t get through this alive, they will suffer, and I will NOT let anything hurt my children if I can help it.  So here I go.

 For now, here's where the story begins (warning: it's not possible to discuss rectal cancer without some embarrassing and gross details, including facts about poop and references to exams and procedures that most of us would rather not imagine.  I'm over the embarrassment now, as I've got other things to worry about).  I am sharing the gory details because plenty of people might experience this and write it off as nothing serious.  I encourage anyone who has even remotely similar symptoms to go see a doctor NOW.

It started in August 2010.  I thought I had developed some hemorrhoids, because I had some slight  bleeding when I went to the bathroom.  Most women who've given birth have experienced the joy of hemorrhoids, and know that they usually heal on their own, so I decided to add some fiber to my diet and be done with it.  The bleeding came and went over the next few weeks.  I had no real pain or discomfort, and didn't give it much thought until October, when I had a sinus infection and a really bad cough.  I saw my doctor in search of some heavy duty cough medicine, and mentioned the bleeding to her as an afterthought.  She confirmed that sometimes a persistent forceful cough can aggravate hemorrhoids, but after thinking about my dad's history, she suggested a colonoscopy, just in case.

Next step, in November, a lovely little procedure called an anoscopy.  You can Google it if you're wondering; it's pretty much what you'd imagine.  The result of that was that the surgeon saw a few small internal hemorrhoids, and nothing else.  No big deal - we scheduled a colonoscopy just to complete things, but I was sure I had no real reason to worry.

Christmas came and went, and in early January, I went in for the colonoscopy.  My husband and I laughed a lot about the prep for the procedure and the awkwardness of the whole thing.  I went to the hospital, had an IV and some really lovely sedatives, and settled onto the exam table.  I don't know how deeply I was really out, because at some point I heard the words "radiation and chemo" and I opened my eyes to a fascinating view of the inside of my colon on a TV monitor, and then I drifted off again.  When I woke in the recovery area, I had a vague idea that something might be really wrong. And, in fact, something was.  Dr. Shellito waited for my husband to arrive and then gave us the news that he'd found a rectal tumor, and that it was probably cancer.  Well.  It's going to be quite an interesting ride.