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...

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.