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.