Saturday, December 27, 2008

Nursing

I warn you that this blog entry is going to read like those Johnson and Johnson ads, about the importance of nursing, that always make me cry, but it’s a subject matter truly close to my heart. Cue the sepia toned images and slow piano music:

Nursing is, hands down, the most underappreciated, difficult, precise, and noble profession that I know of. I have encountered so many incredibly kind nurses – some I have interacted with for mere minutes, and some have been with me for a longer part of my journey. Every single one provides essential medical services that require a lot of training and knowledge, and many have gone beyond to provide comfort, calm and patience at critical and difficult moments. Over the past two years, I have had literally hundreds of nurses participate in my treatment. I never learned some of their names, and have forgotten others, and there are some that I’ll remember for the rest of my life. I have been thinking about how deeply and positively I have been impacted by nurses, and thought I’d share a few specific examples:

Days after my initial diagnosis, I had to go in for a second PET/CT scan. Now, since these first two rounds of tests, I have learned what is standard in the world of required Barium consumption. George Washington University, Georgetown University and Northwestern University Hospitals all agree that two 16 oz bottles is quite sufficient for accurate imaging. But at Washington Radiology Associates, I was told I needed to drink three bottles in the waiting room. Now, drinking 48 ounces of anything in one sitting is a bit of a feat, but Banana flavored barium sulfate suspension is another thing entirely. When I finished, I was feeling pretty sick. When I was taken in the back for a blood test, there was another tumbler of it waiting for me, and I don’t know why, but at that moment the fa├žade of emotional stability that I had been faking for a couple of days broke, and I burst into tears. And the nurse standing there waiting to take my blood didn’t recoil, didn’t awkwardly wait it out, didn’t try to patronize me – she threw her arms around me, patted my back, and soothed me by talking about a patient of hers who had Hodgkin’s ten years ago and had recently come in to visit with her two children and how well she was doing. She simply knew exactly what to say to comfort me, and I have thought often of what she said, and how she said it, and how much it meant in that moment.

More recently, when I was about to begin the stem cell collection process, I went in for an initial consultation and for some lab work. I met with a nurse that really rubbed me the wrong way – her manner was harsh, and she made me wait an hour for an appointment I had with her to go over paper work – an appointment that ultimately took less than ten minutes. I wasn’t looking forward to spending up to five days with her the following week. But when I arrived Monday morning, I discovered that a different nurse named Cheryl would be handling my collection. Cheryl was the type of no-nonsense and take charge person that inspires immediate confidence in her patients, and she was a great conversationalist. Over the course of a long two days, I really enjoyed getting to know her. More than anything, having her there to answer my questions and make me feel confident about the process and procedure I was undergoing made me feel much more positive about the experience than I felt when I walked in that first day. My attitude had everything to do with my confidence in the care I was receiving.

Erin, was the assistant to my DC Oncologist when I first transferred from GW, to Georgetown, a few months ago. She made everything so easy, scheduling appointments, dealing with insurance companies, and being so competent and gentle in her handling of my case, that for the first time since my original diagnosis, I felt as though there was safety net in place if I dropped any of the many balls I was juggling. It made the system feel entirely different from GW’s and literally allowed me to sleep better at night.

Similarly, the transplant coordinating nurse, Jenny, at Northwestern inspires the same confidence. She always makes me feel as though I am her number one priority and is organized, clear, and always on top of a process that is wholly new and scary to me. She makes me feel confident about the system in place and Northwestern. Faith in that system gives me an immeasurably good and safe feeling, and is something that I think is critical to my well-being right now.

Sue was a night nurse at Georgetown (meaning she was assigned to check my vitals, administer my chemotherapy, and generally take care of me from about 8 pm to 8 am), who was one of many caring and attentive nurses and wouldn’t have stuck out in my memory if not for the fact that she communicated very well and effectively with my mom. She inspired a trust that allowed my mom to feel that when she left the hospital overnight, I would be well cared for, and that was a wonderful gift.

Reflecting back two years to my treatment at GW, every single one of the nurses was kind, attentive and caring, which actually almost made up for how little attending and caring my doctor did. Almost. But the nursing staff was great, from Marie who always took my vitals and blood in the front lab, and whom I looked forward to seeing and chatting with at every appointment, to Mary, the business manager who reminded me in every way of my friend Sarah’s mom, to the team of petite, blonde nurses who administered chemo whose names all began with K’s – Katie, Kathy, Kirsten. But one nurse made all the difference. Kyra started administering my chemotherapy drugs – each lasting 6 hours – on my second of twelve treatments, and the adoration was immediate and mutual. Kyra was confident, and made me feel like I was in safe, capable hands. She quickly became familiar with my family and my friends. Some mornings, I would actually find myself looking forward to going to the clinic, because with Kyra there, it was as if I was just keeping a social engagement. She made me feel like I was her favorite patient, her most important patient. In a clinic where it’s unfortunately easy to slip through the cracks, she made me feel like I was a priority. My friends loved her - Kyra discussed dansko clogs with Emily, talked sports with Betsy, and talked about medicine with Jill. She always made sure to keep my favorite chair in the infusion room open. She would return my calls straight away when I had questions, and gave me her cell phone number so that I always had an easy way to reach her. She told me about her family, her dogs, her home renovations, and shared stories from her own life and for the first time, I felt as though a medical professional wasn’t approaching me like a mechanic approaches a broken car – she felt comfortable exposing her own humanity to me, and that made me feel like a human. I tried to spread treatments out amongst different friends when my family wasn’t there so no one had to miss too much work, and I think in the end, something like a dozen friends came with me. Nearly all of them made some variation on the comment: “I know this is really inappropriate, but I’m sorta of having fun”. Kyra is why those days were not only bearable, but sometimes sorta fun.

So when those Johnson & Johnson commercials come on, I tend to tear up. Because I have had so many powerful examples of the positive difference that a nurse can make in the life of a patient. And for that I am deeply grateful.

Monday, December 22, 2008

Naomi’s Marathon

Let me begin by wishing those of you celebrating this week, a Happy Hannukah, Merry Christmas, and Happy Kwanzaa.

I wanted to let you all know that my friend Naomi Wolf is running in the New Jersey Marathon on May 3rd, through a program called Team in Training, which raises money for the Leukemia & Lymphoma Society. She is running in honor of both me, and her mother, Betsy, a survivor of non-Hodgkin Lymphoma.

Here’s an excerpt from an email she sent her friends and family that explains a bit more about her efforts and gives information about ways to help her fundraising efforts:

“As the world's largest endurance sports training program, Team in Training has done its part in trying to find a cure for cancer by bringing over 380,000 volunteers together and raising more than $900 million since its creation in 1988.

In order to support this wonderful cause, and to get me across the finish line, I need your help! Please make a donation to help me reach my goal of $2,600 to help advance LLS's mission. All donations are officially due by March 15, 2009. You can make a donation online at my website:
www.tinyurl.com/nwolfmarathon or you can mail cash or check (made out to the Leukemia & Lymphoma Society) to my home address: 205 W 88th Street, Apt 11G, New York, NY 10024. Your donation is 100% tax deductible.”

Thanks to Naomi for taking on this huge challenge, and thanks to those of you who are able to support this important cause through your contributions.

Saturday, December 20, 2008

Warning: These Drugs May Alter Your Ability to Send Coherent Emails

I did my third round of chemotherapy last week, which ran through the weekend, and hit me harder then any of the previous 14 treatments. Fortunately, the worst of it has passed, and I am feeling a lot better.

I finished the three day treatment on Saturday night, slept straight through Sunday and Monday, and only vaguely remember Tuesday. One of the side-effects of a drug in the chemotherapy cocktail I have been given, is disorientation, which typically manifests worse in older adults. I was convinced I had avoided this side-effect altogether, until Thursday, when I sent my friend Debra a card to apologize for missing her birthday last Saturday. As it turns out, I didn’t miss her birthday, I just didn’t remember emailing her. A quick scan of my gmail sent folder revealed that I actually did quite a bit of correspondence on Saturday...and I’d like to take this opportunity to publicly apologize for any content therein.

Just prior to starting chemo, I completed the remaining diagnostic tests and received the results quickly, thanks to the excellent team of doctors, nurses and techs at Northwestern. The scans revealed that chemo has worked very well, and that I am near a complete remission. These are the best test results I could have hoped for, heading into the transplant, as the efficacy of chemo is the best indicator of how successful the transplant will be. I am hoping to start the transplant as soon as possible, though my body has to rebound from this last round of chemo before beginning the process, which may take a couple of weeks. I was really relieved and happy to get these good test results – and happy to be able to share the good news with all of you.

Wednesday, December 10, 2008

Treating Side Effects Appear to Lead to Additional Side Effects

As is often the case with a big day of medical testing, not everything was able to get done exactly as planned. In this particular case, medication I was prescribed to take to offset an allergy to a an injected dye required for one test (it's a shellfish-based dye, and I've been slowly developing an allergy to it over the 12+ times I have had to have it, which I think is related to the fact that for a couple thousand years, my ancestors didn't eat shellfish?). That medication had an unforeseen side effect that made me ineligible to take another test I needed in order to complete the re-staging process. So I have had to wait to take that test until tomorrow.

But after receiving some of the test results, some conclusions could be drawn. The doctor indicated (tentatively) that this round of chemotherapy has been working, though I will need one or two additional cycles of it before proceeding to the transplant. Depending on test results tomorrow, and on the availability of space in the clinic and hospital, I may begin this third round of chemo as soon as tomorrow afternoon, December 11. Thanks for your good luck texts, calls and emails during this round of testing. I'll do my best to update the blog more often and do a better job of keeping everyone in the loop, but I wanted to let you all know about this possible next round of chemo beginning tomorrow in case you don't hear from me for the next week.

Sunday, December 7, 2008

Stem Cell Harvest







The stem cell harvest was completed last week, and was successful. Over the course of about 11 hours hooked up to the machine, I collected 9.37 million stem cells. The high end of my excellent transplant team’s goal was 10 million, so they seemed very pleased with the results, and if they’re happy, I’m happy. The next step is to re-stage the cancer to determine how the two rounds of chemotherapy have worked. That process begins tomorrow, with a CAT scan, and a PET/CT scan. I will see the doctor on Wednesday to get the results of these tests and to determine next steps. My current understanding is that if the news is great (the cancer is in a full remission) then I will begin the transplant immediately. If the scan shows that there has been some success with chemo, but it has not been completely effective, we may proceed with additional rounds of chemotherapy (and there’s a slim chance of more radiation being used). If the cancer isn’t better, or is worse, then we reassess the full plan. Whatever happens, I will post an update sometime Wednesday or Thursday.

In the meanwhile, I have been keeping busy and distracted and enjoying home and the city as much as possible. It’s been snowing a lot here, and I am re-learning how to not drive like a DC resident in the snow (sorry everyone, but you have to admit that DC drivers are wussy about snowy weather!), spending lots of time in the city doing cool stuff (my insider tour of the Harpo studio was a highlight this week! Thanks Katie Baker!) and enjoying lots of out-of-town visitors (a planned visit from Emily and Julie, with surprise visitor, my college roommate Erica!) It is also really quite nice to be able to sleep as much as I need to, rest when I feel like it, and not have the pressure of maintaining too busy a schedule when I feel sick.

In addition to this brief medical update, I've posted the letter I previously mentioned receiving from then-candidate, now president-elect Obama! If you click on it, it will open in a new window, full sized. I can’t wait to see what an administration made up of the people coordinated and talented enough to respond to what I guess one could call campaign constituent needs, is going to do to make change in this country.

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

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

Change

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.

Thursday, October 23, 2008

Birthdays


My birthday has the distinction of falling in a season full of family and friend's birthdays. The season kicks off with my mom's in late September, followed just three days later by my sister's, then it seems like there are friend's birthday parties and dinners every week until the middle of November. I shared a birthday month with lots of friends in college, and in both very small offices I've worked in since graduating, I have had the same birthday week as several colleagues. And all these birthday celebrations always work well in tandem with the Jewish calendar since the world itself celebrates a birthday in the very same season, reminding all of us to look back on our experience the previous year, and pray for a good year ahead.

The truth is, for the past 3 years, my birthday has been fairly bittersweet. My 23rd was celebrated just three days after my first biopsy and two days before my initial cancer diagnosis. After a tearful early morning goodbye with my family, friends arranged dinner and everyone worked hard to keep the mood light. Last year was more celebratory - an affirmation that I had made it the murky distance between 23 and 24, finished chemo, radiation, moved apartments, finished my fellowship and began a new job, and could start picking up where I left off, even more equipped with a deeper sense of appreciation for the mundane, the extraordinary, and the opportunity for another year. 24 really felt like a fresh start, and it was a wonderful year.


This year, my 25th birthday, was full of fun, including lots of celebrating, wonderful cards, calls and emails from lots of you, friends in from out of town for the weekend, and my best friend Abby in from Israel for nearly a whole week. Yet through it all, there was an ever-present dark cloud heavy with the one question that I can barely bring myself to ask aloud: will this be the last birthday I celebrate? And though I know that everyone who called, wrote, came for dinner, attended a joint party with two other friends on Saturday, and even schlepped to DC for a fun celebratory weekend, were sincerely there to celebrate, I couldn't help but wonder if the question wasn't on their minds too. 

During the days of awe in the Jewish calendar, I always find myself struck by the fact that Rosh Hashanah, the celebration of the new year, precedes the retrospective, solemn holiday of Yom Kippur. Why would you ring in the New Year with a celebration, and then go through the remorse and contrition of the Day of Atonement? Wouldn't it make more sense for us to spend a day (or ten) reflecting on all that we did in the past year, good and bad, and then start fresh, with a clean conscience and new commitments for the coming year? I'm still not sure I understand the wisdom of this order, but this year, I find myself thinking about how this relates in my own life, to the juxtaposition of my birthday and treatment. I start chemotherapy one week after my birthday - and that made my birthday feel sort of strange: similar to the way that I always feel on Rosh Hashanah - perhaps for the same reasons that the Jewish New Year always feels more heady than secular new year celebrations. The holiday of Rosh Hashanah is a celebration at it's essence, but with a fairly big helping of remorse, of sadness, of a promise of redemption, if only you're willing to work for it. But then, I suppose that Rosh Hashanah tends to temper the blow dealt by a day of guilt, atonement and repentance too. The sweetness of apples and honey is supposed to stay on your lips even as you beat your chest and repent for a year's worth of regrets.

The sweetness of a wonderful birthday celebration will still be on my mind and in my heart when I start chemotherapy tomorrow. And it was a wonderful birthday, even with the little cancer storm cloud looming in the distance during the festivities. Celebration and sadness can't really ever be fully divorced from one another, and I suppose I am glad for that, even as it feels surreal to go from a night of fun on the roof of Local 16 with my friends to being admitted to the hospital five days later.

I'll be at Georgetown University Hospital from Thursday (10/23) through Sunday (10/26) and would love visitors. Please call my phone (202 213 0258) or my sister's (847 924 9185) if you'd like to stop by. Feel free to email as well - I hope to have wireless. 

Thank you all again for the good birthday wishes! And speaking of birthdays...happy birthday Cara, Mari and Nina!


Wednesday, October 8, 2008

Introduction

After being in remission for Hodgkin’s Lymphoma for one year, my cancer has returned. On October 23rd, I will begin three rounds of salvage chemotherapy at Georgetown University Hospital before returning home to Chicago for an autologous stem cell transplant.

Unlike my previous round of treatment, during which I was able to function fairly normally and receive out-patient chemotherapy and radiation, this next round requires several hospital stays. Consequently, I have decided to devote some of the forced down-time to maintaining a blog so that family and friends can stay up-to-date on my progress, and so that I have a repository for some of my thoughts on the treatment and healing process.


I have to admit that I hesitated quite a bit on the blog title. My first instinct was to go with a pun on the word “stem” given the double meaning of the term: both because I was to receive a stem-cell transplant, and because I would be leaving Washington DC, where I have lived for over 6 years, to return to Chicago where I grew up (from whence I stemmed, if you will) for the transplant. There were some great ideas. Here's a small sampling:

-Where it all stems from (thank you, mom)
-How do you like stem apples (thank you, Julie)
-High Este(e)m (thank you, anonymous hipster on the 42 bus who overheard my phone conversation with Caren and decided to make a recommendation)


But in the end, besides not being able to come up with anything that met my high standards for wittiness, I decided that maybe the blog title shouldn’t be treatment focused at all. Because while its purpose is, in part, to update folks on how the stem-cell transplant is going, I hope that it will really be about much more than that. While I’m in the hospital, I hope that my focus will be on what I will do when I get out and who I will be when this is over, not the treatment itself. I want to be able to keep my focus on what is worth fighting for. And so I kept coming back to a quote by Friedrich Nietzsche, which I first read as a high school student in Viktor Frankl's 1946 book Man's Search for Meaning: “He who has a why to live, can bear with almost any how.”

Frankl went on to say in his book, that "between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom." I believed, when I first read these words a decade ago, as I do now, that this is the essence of overcoming any hardship, big or small.

So on the virtual pages of this blog, I will report on the stimuli, on my response, on my why and how, and on the journey that I will take in the coming months. Thank you for sharing it with me.