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.

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!