Monday, May 30, 2011

Counts Coming Up

The big news here is that my white blood cell counts have already started coming up which means, amongst other positive things, that my immune system is slowly restoring and that I may be able to leave the hospital for more recuperation at my parent's home, this week! Beyond the small set-back of a fever yesterday, which is very much expected when the immune system is so low, everything is going smoothly.

Meanwhile, I pass the time by trying as best I can to keep in touch with all of you and listening to a lot of
a 24-hour nature channel that shows calming scenery of flora and fauna, with accompanying light, soothing music. And I sleep. A lot.

Thanks as always, for your visits, cards, packages and communications in their many forms. Even more than the CARE Channel, you're getting me through this.

Thursday, May 26, 2011

You Are Here, I Am Here, Here I Am

My white and red blood cell counts, as well as platelets and other measurable aspects of my immune system, are, as they say, bottoming out. All of these counts are dipping as the doctor's intend, and characterize a first of many layers of success with the transplant process. While my immune system is non-existent, I'm staying in the hospital to prevent infection, and receive platelets and blood transfusions, trying with each passing day to maintain my sense of self and individuality in the face of institutionalization.

In general, I aspire to be in a more regular state of mindfulness. But the sad truth is, mindful moments are extremely rare for me: I spend most of my time preoccupied with minutia, logistics, and things that are fleeting. Mindfulness is not a strength that I possess.

I'd been giving the concept of mindfulness a lot of thought during my recent course of radiation, and decided to challenge myself. Given that I found that daily practice pretty loathsome, I decided to see if I could ritualize the 40-minute daily treatment process by being present and mindful through a mantra of sorts. The theory is that if I can be mindful when I most want to escape reality, in a challenge that I find physical and emotionally painful, I can apply the concept to other parts of my day and experience more easily. And that by ritualizing the experience, it provided some context and inner strength to stay physically still for so long and transcend the pain accompanied with doing so.

The mantra began to take shape about a week before I began radiation. Three friends and I went to hear the Wailin' Jennys perform live at a local venue in Virginia. My friend Emily, social media maven that she is, had been tweeting back-and-forth with their account on Twitter since we'd purchased the tickets months ago, and had requested a song. She'd also tagged the band, as well as all of us attending the show, on Facebook the day of the concert. They tweeted at her at some point that same day to let her know that because one of group members was a bit hoarse, the group wouldn't be able to sing this particularly high-note inclusive, specially requested tune. So we were quite surprised when, a couple songs into the second set of the night, the group dedicated a different song to us. Group member Ruth Moody explained that she had written the song in the hopes of being more mindful and worrying less, and they began to sing a song called You Are Here off their new album. A truly beautiful tune that stuck in my head, the chorus is:

And there's no making cases
For getting out or trading places
And there's no turning back
No, you are here
No, you are here

Then I got to thinking about a couple of months ago when my friend Amy, a yoga instructor, taught me a Kundalini Yoga chant that aims to even breathing, decrease stress and help clear negative energy. She taught be to breathe in - Sa Ta and breathe out - Na Ma, and explained that translated from Sanskrit, the chant, satanama, means, "I am here."

These two concepts aligned well in my quest for a mindfulness mantra, but a piece was missing. There were three parts to radiation: three separate fields being irradiated. The third part came to me immediately.

In Hebrew, there's more than one than on way to say "here I am" or "here you are," but there are very select, special times in the Hebrew Bible when a term is used to define presence of a human being in their interfacing with God. So Hineini: Here I am, became the third phrase to focus upon during my attempt at a mantra.

By the final days of radiation, the mantra began as I lay down automatically, and in the days since then, I have continued to use each individual part, and the collective together, as I strive for mindfulness even in the hospital where it's easier to settle for the convenience of shutting down, and detaching from your awareness of yourself as institutional practices inevitably diminish your sense of individuality and self.

So I'm trying each day to remind myself: you are here, I am here, here I am. And I'm getting through it, slowly and one day at a time.

Monday, May 23, 2011

Day +5

Today is the 5th day since the transplant, and is counted as day +5 in the new way that I'm counting time. There will be milestones, and eventually, a year from now, days will return to a normal count, as they did the last time.

In the meanwhile, I am trying to make the best of the hospital stay; enjoying time with friends and family when I'm awake, sleeping a seemingly impossible amount of the time, and maximizing my access to the amazing medical professionals who are helping to ensure that this time goes smoothly as it can.

The past few days I have felt incredibly tired as my red and white blood counts and platelets all drop down into the realm of being neutropenic, mandating even more stringent safety precautions to avoid infection.
It's a re-building period, one which I hope will begin to look-up soon. A lot of the day-to-day of this experience parallels the last time around, documented here on the blog as well. Though this transplant is different by definition of having received cells from a donor, the short-term process (the next month or so) is very similar. Beyond then, I still have a lot of learning to do!

Saturday, May 14, 2011


Food on a tray, that sterile latex smell, two white boards & six trash cans in a 200 square foot space: I'm back on the transplant floor of Northwestern Memorial Hospital.

I checked in today to begin pre-transplant chemotherapy tomorrow, and prepare for the transplant on Wednesday. Everything is going smoothly thus far, and I have some updates and additional information that I wanted to provide so that I can stay in touch with you all over the next few weeks.

I am currently located at:

Prentice Women's Hospital

250 E. Superior

Chicago, Illinois 60611

15th floor - room 1596

Room phone (312) 472-1596

As I previously posted, I would love to have you come visit while I am in the hospital. Please feel free to call the room or my cell phone to check that there aren't any last-minute shenanigans going on. When you come, you'll need to wash your hands before entering the floor and sanitize your hands again outside of my door. And, if you have a cold, infection, even a sniffle, it's best to hold-off on the visit until my immune system is better.

Many of you have asked about the best address at which to direct mail. The hospital's mail system proved a bit problematic the last time around, so it's best to send items to my parent's home:

3112 Temple Lane (yes, I grew up on a street called Temple Lane)

Wilmette, IL 60091

It's strange to be back on this floor where I have not been for two and a half years. Many of the same doctors, nurses and staff are here, the room itself, though not the exact same as the last one, is quite similar. It's a bit surreal, a bit sad, a bit comfortably familiar and relieving after this marathon of preparation, all at once. So far, the biggest difference between the last extended stay and this one, is the technology that I have access to. I have a much newer and quicker computer, complete with a camera and the ability to Skype and video chat with friends and family (I'm ElissaFroman on Skype, by the by). I have access to a better wireless network here at NMH. And, thanks to an office building raffle and a lucky coin-toss, I have an Ipad upon which I can watch movies and TV, download books, and do just about anything else. I have lots of new ways to connect and communicate, and for that I am deeply grateful.

And thank you for all of your recent emails, cards, calls, texts, tweets, wall posts - your good wishes and prayers really mean more than I can say.

Wednesday, May 4, 2011

The Date is Set

After many months, the stars have aligned: my bone marrow donor is ready to donate and, having finished my course of radiation this week, my doctor feels the time is right for me to receive the transplant. After I temporarily wrap affairs up at work, get my apartment ready for subletting, pack for what will likely be a couple of months in Chicago, and do the 101 things left on my to-do list, I will travel from DC to Chicago this Wednesday, May 11. If things go as currently planned, I will check into the hospital on Saturday, May 14 (day -4) first thing in the morning. On Sunday, May 15, we will begin my three-day pre-transplant protocol of chemotherapy and anti-rejection medications. Meanwhile, my heroic, anonymous, 21 year-old male bone marrow donor in Israel will donate his cells in Israel, to be flown to Chicago on May 17. Then, on Wednesday, May 18 (day 0) I will receive the bone marrow transplant - a wonderful and already note-worthy date in my annual calendar as it is the birthdate of two of my very closest friends, Abby and Gideon.

I plan to post more details about the experience of packing up life in DC temporarily, more on the radiation experience these past few weeks, and about how I am feeling about the prospects for success with the transplant, but for now I want to ask two kindnesses of you.

1) If you are able, please consider donating blood or platlets in these next couple of weeks. During the transplant process and in the days, weeks, and even months after, it is likely that I will need blood transfusions and platelet infusions to help get me through the experience. Before I became sick, I was proud to be a regular blood donor (it was not purely altruistic: the Red Cross HQ in downtown DC, practically on my college campus, had really good complementary snacks for donors) but now, for obvious reasons, can no longer donate. This has been a particularly sad byproduct of having cancer for me - and it would make me feel great to know that the people in my life went and donated in the weeks that I'm in the hospital. If you do donate, and you are comfortable sharing that, let me know or post a comment here on SWHAW.

2) Come visit me. If I've learned one thing about my healing process, it's that I am sustained, bolstered and energized when I spend time with friends and family. Thankfully, Northwestern understands this as a medically significant phenomenon, and thus, visiting hours on the floor (15th floor of the Prentice Building at Northwestern Memorial Hospital in Chicago - I will post an update once I know my room number) are 24/7, though my preferred visiting hours are about 11 am to 8 pm. The only barrier to visiting is that it is dangerous for me to be around you if you have any hint of a cold or infection.
Feel free to call or email me in advance to check-in, and know that you are very much welcome anytime. If the next couple of weeks are particularly busy for you, no worries - I will need company when I am recuperating after I'm released from the hospital, too. Friends outside of Chicago: I will be very excited for your visits both when I am in, and once I'm out of, the hospital, so if you've never experienced the magic of Chicago in the summer, consider a visit!*

*(This blog post brought to you by the Chicago board of tourism)