Wednesday, July 29, 2009

angels among us

When I was diagnosed with breast cancer, I knew right away that I would seek treatment at Dana Farber Cancer Institute in Boston. I didn't stop to think about the logistics. We have generous friends and family in Boston, all willing to help us out in any way that they could. I figured we'd work something out.

But a ten hour round trip by car is not feasible every week, or even two. With the need to maintain some semblance of a normal schedule for a family, and the wear and tear of the treatment, getting to and from Boston as quickly as possible is very important. And that's what the pilots of Angelflights do for us.

Angelflights is a non-profit organization that coordinates free flights for medical patients with pilots who fly their own planes on their own time, at their own expense. The biggest drawback for many patients would be the size of the planes, which tends to be small. Very small. This is not a problem for me. I love flying in general, and particularly in tiny planes. I actually consider it one of the (very few) benefits of having cancer that I have had the opportunity to fly along the coast of Maine a number of times now, just a few thousand feet above land. It is exhilarating, and beautiful, and so much quicker than by car.

This is one of the first planes that we traveled in. I took the photo of it from the back seat of one of the next planes we flew in. This was when they flew us to NYC.

This is the view of the Deer Isle Bridge that we had from that first little red and white plane. Isn't it breathtaking?

Our return to Mount Desert Island after my last treatment. Seeing the island again, whether from the road or from the air, always brings me a feeling of peace.

This photo is of our last pilot, Dan Herrick, just about to land the plane at the Bar Harbor airport. See the runway through the windshield? Isn't that cool? That's my partner, Greg, beside him in the front seat. Another benefit to flying this way is that we get to wear headphones and listen to all the air traffic control radio. I know, I'm a geek.

If not for Angelflights and the pilots who fly for it, getting treatment for cancer would have been much more difficult for me, making an unpleasant experience torturous. I am so very grateful to these very generous people who have made life so much easier for so many of us. Greg and I have flown about a dozen times with about 8 different pilots now, and have been taxied from remote airports to Boston by 2 Earth Angels. Angelflights flies patients with all sorts of medical needs, and of all ages. There are distinct Angelflights organizations all over the country; the one I've been flying with is Angelflights Northeast. Their phone number is 1.800.549.9980. You can find them on the web here.

Friday, July 24, 2009

medical yawnery & White Blood Cells

I haven’t written much about the chemotherapy experience. I’m sure that, in a way, I have felt that if I ignore it, it will be easier to deal with and will pass more quickly. There are a few too many things that I deal with this way in my life. So in the spirit of making some changes for the better, let me tell you a bit about it.

Along the same lines, I find myself in this small pickle of being keenly aware of how precious each day is, and yet yearning for August 6 to come and go. My last treatment is scheduled for that day, and I will be so glad to have it done. I’d like to assure you that I have been accepting each day as a special treat just for me, but there is no doubt that some days seem more like gifts than others. And not just because of the effects of chemotherapy. I’m guessing I’m not alone in this feeling. Yet another day of rain with cooped up quarreling kids and a headache does not make it easy to enjoy living in the moment. It makes me yearn for a vacation moment, actually.

But we are here to talk chemotherapy. The brief nuts and bolts version is that every other Wednesday Greg and I fly down to Boston via the wonderful pilots of Angelflights (a post on that soon to follow), and stay in deeply discounted hospital affiliated rooms overnight for early morning appointments on Thursday at Dana Farber. We get there and I’m almost always taken very quickly from vitals room to blood draw room to a meeting with my oncologist. The nurses who put in my IV and draw my blood are pros; it is quick and almost completely painless and I’m usually in and out of that room in less than 12 minutes. Since I’ve had past issues with blood draws and IVs, usually involving passing out, this is a very good thing. Then I see my oncologist and we talk about how the treatment went last round. This is my chance to tell her about my minor aches and pains, because really, this is all that I have had so far. Most of my side effects have been so minor that I asked her if that meant the chemotherapy was being less effective. I mean, even my hair, after an initial exodus, seems to be hanging around. Well, sitting around, short and stubbly. Not much hanging going on there. She assured me that it doesn’t have to be a wretched experience in order for it to work.

Don’t get me wrong, I’ve got my share of complaining to do, and Greg and my beloved workmates get more than their share of listening. On one of the first nausea meds (they have me on multiple), I experienced migraine auras. They replaced that one for round two. Most of the nausea meds are given right at the beginning of treatment. Then I take a couple more Friday and Saturday, and I haven’t needed to supplement them after that. I have yet to feel anything that I would describe as nausea.

After seeing my oncologist, we go up a floor and wait for the "infusion." Doesn't that make it sound nice? Like I'm in a good smelling spa or a bar with yummy vodka. They lead me to a big lounge chair and start me on a pile on nausea meds. After the nausea meds come the big drugs. Three injections of Adriamycin into my IV. It is bright red and is the one that can cause possible heart damage down the line in less than 1 percent of patients. That low number doesn’t stop my heart from skipping beats when I think of it every now and then. The second drug is cytoxan, and it is given through a drip into my IV that takes about an hour. That one can cause bladder irritation, but luckily my brain doesn’t seem to register the possibility in order to add its influence. The only discomfort I have ever felt during the actual treatment is at my IV site on my hand, and has been either the chill of the saline or an occasional icy burning when she injects the Adriamycin. If I put a heat pack on early it helps. 

On Friday, at home and at least 24 hours after my treatment, Greg gives me a shot of Neulasta. A shot that costs $4100, by the way. Even my insurance company, notorious for agreeing to pay only, say, $9K for $38K surgeries, is paying $4100 per shot. There isn’t anyone left in this country who thinks the healthcare system is just fine the way it is, is there? So he gives me this shot, which is formulated to boost my white blood cell production so that my body will be ready for the next chemotherapy treatment. Normally treatments are given every 3 weeks apart, but because I had been considering continuing with Taxol (which I think I won’t now) and also because there may be some benefit to having the AC 2 weeks apart instead of 3, here I am. I’ve decided against the Taxol for a number of reasons. Though there have been preliminary studies showing increased effectiveness in reducing recurrence, that increase has been primarily in hormone receptor neutral cancers, which mine is not. And one of Taxol’s potential side effects is numbing of the fingers and toes. It is not common and is usually temporary, but if I were to lose feeling in my fingers, I would be miserable. Most of the activities that bring me the most joy demand manual dexterity, and it doesn’t seem worth the risk at this point.

I spend Friday and Saturday feeling mostly fine; one of the drugs I take both those days is a steroid, so I don’t notice much by way of fatigue. Of course I’ve been taking it pretty easy those days, too, so certainly that helps. By Sunday evening I’m starting to feel a bit drained and Monday and Tuesday are a little long, just feeling vaguely headachy and pretty tired. But then I’m fine again until about a week after the treatment, which is when my blood counts must drop. But the Neulasta has been doing its thing, too, so I’m a little tired from low blood counts and a little sore in my joints from the action of the Neulasta. I limp around and complain a bit the second weekend. By Monday I’m feeling pretty swell again. Ready for another round on Thursday. And the next round will be my last. Let’s hope it’s for good.

On a lighter note, I’ve found one of those albums that I just know will mark this time for me for the rest of my life. And I don’t mean in a bad way. I have so many of those, full albums or just songs, that can transport me back to a night in Jen’s dorm room in 1988, or to waiting tables at the Lompoc in 1994, or to the evening my daughter was born in 2003. It’s really remarkable to me, and can be just as vivid a time trip as odors can take me on. I just got my hands on The White Stripes White Blood Cells. How apropos, right? I chose it before realizing the connection. I’m thinking that the kickass music and lyrics are helping to boost my own white blood cell count. I love it because it can be loud and a little harsh, which is one way that I might describe the chemotherapy treatments, but moves right into some of the sweetest moments. Also a byproduct of the chemotherapy experience for me. “Every breath that is in your lungs is a tiny little gift to me.” That line makes me swoon. And “It might sound silly, for me to think childish things like these, but I’m so sick of acting tough and I’m gonna do what I please.” Yeah, baby.

Monday, July 13, 2009

"...i'll smile instead."

About two weeks after my first chemotherapy treatment, my hair started to come out in handfuls. This was no surprise, of course, but it was somewhat alarming all the same. I knew I didn't want to have it continue this way until I was left with wispy strips here and there on my head, so we had a family date to shave it off. Perhaps not so enjoyable as, say, a family picnic or game of wiffle ball, but I suspected that it would be much easier on the kids if they were part of the process. Having me leave with hair and come home bald would have been pretty disturbing to them. So last Saturday we made pizza and put in a movie and gave me a haircut. Greg did the cutting, Jacob took pictures, and Claire offered moral support. "If I feel like laughing, Mama, I'll smile instead."

Greg wasn't able to get all of it off with the clippers that we had, and I wasn't up for a razor, so I have about an 1/8th of an inch of salt & pepper stubble. I expect this, too, will fall out before long. Jacob seems to wish I would keep my head covered, Claire laughs at me a bit and likes to rub her hand on my head. Overall the experience hasn't been quite as traumatic as I thought it would be. But I'm not quite sure what to do with my naked head.

I'm more comfortable just leaving it uncovered than I thought I would be, at least around the house, but it's a little chilly. The pre-tied scarves I have give me a headache. I'm going to have a go at tying a scarf myself, but I suspect it's going to end up in a silken knot around my neck. I have a wig that I wear when I leave the house, but it's not really comfortable enough to lounge around in. And I do like to lounge. As luck would have it, I've been making a lot of baby hats lately. Here are two of them.

Soft cotton and pretty cute, I think. The pattern for the cabled one is
here, the flowered one is in a book you can find here. My head is an awful lot like a baby's right now, so I'm going to make myself one of these hats. I think the one with the flower. I'm not quite ready to post photos of my bald self quite yet. But maybe I'll take one of my hat when it's done.

Friday, July 10, 2009

happy birthday to me

It's my 41st birthday. Over the past few couple of years, these anniversaries have become occasion for reflection, albeit somewhat somber. My 39th birthday was just a month after Kristen died, and I felt I was balancing on the edge of a chasm most of the time. Muddling along at the Lompoc, at home, in life. My 40th wasn't as hard, but I had just sold the Lompoc, and although that was a good thing, my life was definitely in upheaval. Not an easy place to enjoy what was a difficult milestone birthday simply by virtue of the number. The reality of being in the middle of life hit me hard, and it wasn't entirely pleasant.

I've always been a big fan of my birthday, a great excuse for a party for a true party girl at heart. So after my mellow 40th, I thought I'd get a little wild and crazy for my 41st. Little did I know what was around the next corner. 

So my reflections today have led me down some rough paths. The past couple of years have been full of primers. I am 41 and have lost someone that I thought I'd have beside me for another 40 years. That is a loss from which I will never fully recover. I've left one career and while I did stumble into another one that I love, I wonder if it is right for me for the long term. And I have had cancer. I will be in treatment for cancer until I'm 46. If I'm in the majority and make it to 46. 

After dinner tonight, Claire climbed into my lap and I held her and tried with all my power to wrap her in my love, tangibly, physically. I want to watch her and Jacob grow up, be there with them while they do it. And I might not. Now I realize that any one of us might not be here tomorrow, or in a year, or in five. But my "might" is a little mightier than most lately, and sometimes it brings me to tears.

Other reflections today have been less sorrowful. Lying in bed with Claire while she fell asleep, I was thinking about trying to pay attention to each moment. It's hard, and I think it has gotten harder as I've gotten older. Looking out Claire's window at the leaves moving in the breeze, I remembered lying in my own little bed in Five Islands, appreciating the rustle of the oak leaves in the summer just outside my window. Getting out of bed then and going downstairs and out the kitchen door, to sit on the steps and breathe deeply the summer air, stare at the calm, sparkling water of Gott's Cove. I can't see the ocean from my house now, but I can sit and gaze down the long field of gardens, apple trees, and lilacs at a mountain's peak. Life is very, very good.

One resolution I made today is to do something I have been thinking about since Jacob was born, almost 10 years ago. I thought then that it would be a gift to him to write him a letter on his birthday each year. To tell him about the past year, about his character and personality and antics. To tell him once again how much I love him and the ways I love him and that I will love him forever. Almost 10 years have passed, and I haven't written a single letter to either of my kids. But sitting there with Claire tonight, it was clear to me that there was no better way to insure that I could pass along my love made tangible, no matter what happens. And it will be a gift not just to them, but also to myself.

Thursday, July 2, 2009


(I took this cue from a good friend who has an excellent blog at I'm sure I'll have more words soon.)