Tuesday, November 18, 2008

The Latest from the Windy City

Last week I had my second round of ICE chemotherapy in both the outpatient and inpatient departments of Northwestern Memorial Hospital. Thanks to some different anti-nausea drugs, this round was a bit easier than the first one, and I'm feeling pretty good.

Things will be relatively quiet for the next week, and then I start giving myself shots to stimulate the production of stem cells in my bone marrow, and taking medications to get those stem cells to move to my blood stream. And then, next Monday, the 24th we begin collecting them. That harvesting procedure will be outpatient for a few hours each day, and most likely over the course of two or three days. I was going to explain the whole process on here, but actually got a bit sqeamish, so if you'd like more information, I found this link which is pretty comprehensive. I also found a picture of the machine used for the stem cell collection on flickr. I especially enjoy the expression on the face of the technician or doctor next to it. My thoughts exactly, guy.
If timing works out as I hope, I will be able to join my family and friends for Thanksgiving, before repeating diagnostic scans the following week which will determine whether we're proceeding with the stem cell transplant immediately, or doing additional rounds of chemotherapy before the transplant.

Thanks to everyone for being in touch. It's been really nice to hear from all of you, and see those of you here in Chicago. I hope you all have a very nice thanksgiving!

Sunday, November 9, 2008


Hair. I have always had a lot of it - thick, curly hair that I mistakenly brushed out as a kid but it was the 80s, so thankfully, I blended in. My eastern European genes also meant a unibrow that made me look like a cross between the Super Mario Brothers, and Burt from Sesame Street, so around age 12 I started waxing 'em. If you've met me only in the past thirteen years, I assure you what's currently sitting above my eyes is 1/10th of what once resided there. As I got older and headed off to college, I learned new and exciting secrets of hair maintenance from my similarly blessed sisters, and waxing, plucking, straightening, gelling, and mousing have been part of the routine ever since.

Since hair tends to get a lot of my time and attention, I appreciated the irony of how difficult it was, at the age of 23 to cope with the temporary alopecia that accompanies many types of chemotherapy, including my ABVD regiment. My sister got me a whole bunch of fabulous hats, scarves and head shmates, and as my hair thinned, I wore them, got used to them, and even tried to appreciate the additional accessory. And significantly, my hair didn't completely fall out, which actually allowed me the ability to look almost like I was just accessorizing. Maybe I'm fooling myself, but there were a lot of days in those 8 or so months, where I really enjoyed feeling like I was passing for someone normal and healthy. Though usually I just ended up getting mistaken for a married Orthodox woman - resulting in some priceless awkward moments, including one with a certain ambassador from a small, democratic, Jewish state in the Middle East.

But in private moments, before the hat went on, as I looked at myself in the mirror, as I showered, as I combed my hair, the loss of that identifying marker, that hair which I had done battle with and had learned to love, was incredibly difficult. And moments that a person with a full head of hair could experience - sleep-overs with guests, sharing hotel rooms with co-workers as I traveled for my job, respectfully removing head-wear during the national anthem, hanging out with roommates just before bed, or just a swift gust of wind - became another completely new and difficult-to-manage circumstance.

The head nurse at the GW Cancer Clinic, Kathy, told me just before my first round of chemotherapy that she thought women looked beautiful bald. Regardless of whether I agreed, I found myself thinking often about that statement as a source of inspiration and comfort. And I told myself over and over that it would grow back, and indeed, it did.

I began chemo 16 days ago, and, as I was told it would, my hair began falling out on day 14. The past 72 hours have been a repeat of what I experienced the first time around, only highly accelerated - my hair hasn't thinned slowly over the course of weeks and months this time. At first it was clumps in the shower,  and the minor trauma of watching dozens of hairs at a time swirl toward the drain. Then, throughout yesterday and today, absent-mindedly twirling a curl around my finger meant pulling out that curl, still fully intact. Each time this happened, I was caught totally off-guard and felt a panicky shock. And the past two nights, I have woken up nearly every hour, to feel my pillow to see if it had all fallen out, as is very common in chemotherapy patients. 

Around 1 am tonight, (this morning?) I just couldn't take the hair falling out all over my apartment and out in public, and I felt that I couldn't cope with another night of interrupted sleep. The inevitability of my total hair loss, in just a couple more days regardless of how much I washed it or touched it became clear. So I stood in front of my bathroom mirror, and gently ran my fingers through it, feeling the curls simply give way in my hands, like when you very gently touch the petals of a flower that's dying and they drop off so easily. It was such an odd, surreal sensation. I ran my hands through my hair over and over again, piling hair in the sink, until I looked down at it and found myself staring at the back of my own head. It will grow back, I said aloud, it will grow back, it will grow back, it will grow back. 

It's an astonishing thing to look into the mirror at a reflection of yourself that you haven't ever seen and never imagined you would - I guess the feeling is akin to dying your hair a radically different color or getting a piercing or maybe the first time you see your body after giving birth. Even if you knew a drastic change was coming, maybe even elected to do to yourself, the transformation still surprises you. And I tried to look into the mirror and see what Kathy sees when she looks at a bald head - something different, but beautiful. I wish I could, and maybe when the shock wears off, I can work toward that goal. But right now, all I can do is try to stop crying and try to get some of the sleep I was seeking by taking things into my own hands in the first place.

Wednesday, November 5, 2008


My original treatment plans have changed and I will actually be heading home to Chicago this coming Monday, Nov 10 for the duration of treatment, both the rest of chemotherapy and the stem cell transplant. This new plan is primarily the result of my insurance company’s requirement that the round of chemo proceeding the transplant occur in the same location as the transplant itself, and since the doctor isn’t sure if I will need one or two more rounds, they wanted to be on the safe side and do the rest of treatment in one place. I went to Chicago last Thursday to meet the doctor and team that I’ll be seeing at Northwestern University Hospital downtown, and got a very good sense of their excellent program and facilities.

I’m incredibly sad to be leaving Washington for these months, but relieved, euphoric, and excited about returning to work with the Obama administration and Democratic majority to follow through on all this change and hope business. I want to take this opportunity to congratulate everyone on the outcome of this historic election, and thank all my friends who have been working full-time on this campaign – Jenny, Becca, Matt, Erin, Gwen, Julia, Josh, and to the many more of you canvassed, made calls, donated your time and money – you have secured a better future for the whole world and should be incredibly proud of your hard work! And I thank those of you who read my initial email and took the time to call your friends in swing states, and forward my thoughts to others. Evidently, the emails made it pretty far, because just before going into the hospital for my first round of chemo, I received an extraordinarily kind letter from Senator (and now President-Elect!) Obama himself, thanking me for my efforts on behalf of the campaign and wishing me luck with treatment. Needless to say, this meant the world to me. I will scan and post the letter shortly.

Leaving Washington is going to be very difficult. The ability to stay in DC two years ago, the first time I went through treatment, allowed me to maintain some semblance of a normal life. It felt good to deny the cancer the right to subsume all my hours, thoughts and energy by continuing to work and play even in a diminished capacity. In some ways, going home to Chicago, taking a leave of absence from my job and my volunteer work, and leaving my friends, feels a little like giving over the reins of control.

Despite being sad to leave here, there are many things to look forward to in Chicago. I am grateful for the opportunity to spend a lot of quality time with my whole family, and lots of friends I don’t get to see as often as I’d like. I think it will be helpful to focus more fully on treatment and recovery without trying to integrate it into my life as one more commitment to juggle. I am looking forward to making my way through a long list of books I have been looking forward to reading. And, honestly, I’m looking forward to having the amenities of my parent’s wonderful home at my disposal because as tough as I like to think I am, I can’t deny that my mom’s car is an easier way of getting around than the public bus, and a washer and dryer off the kitchen is more convenient than a coin-operated laundry in the basement of my apartment building.

I’ll be leaving for Chicago on November 10, in chemo at Northwestern from November 11– 13.