Worth about 239,000 words

Happy New Decade! We have two updates.

First, Susannah's transplant has now been more or less firmly scheduled. She'll be going into the hospital on January 22nd (Not January 8th, as we previously believed). She'll have several days of chemotherapy, followed by radiation, the transplant itself, and then engrafting. She will probably be hospitalized between three and four weeks, a little less than we had expected.

It may be possible for a few people who are in very good health to visit her in the hospital, depending on her energy levels. Please contact Ethan about that, well in advance. (trelevenfarm at-sign gmail.com)

Second, we have recieved a wonderful Christmas present from Sarah and Brian, along with at least twenty-four other people. It is a group effort, and we hope you'll join in.

Susannah can't bring too much stuff into the hospital with her. Sarah and Brian have given us a digital picture frame with an SD memory card, which currently holds about 239 pictures (Of us, of our family, our friends, our friends' babies, people's vacations, all sorts of things. Some of them are straight photos, and some have messages on them. It's incredibly cool.)

And you can get in on the act. Sarah has set up a communal website which you can join and upload pictures, which we will then download onto the picture frame. (Also, you can check out the pictures yourself). It is very nifty and easy to use. If you're daunted by the technology, ask someone under 25.

So. Happy holidays and turning of the year, and thank you, everyone, for all your many kinds of love and support. See you in the magic picture frame...

Transplant soon...

We've entered the countdown to the moment when Susannah enters her reparative bubble: January 8th or 15th, depending on whether or not her bone marrow donor travels, like so many of us, over the holidays. In the waning days of the year come more details on that confinement, and also the Preparatory Appointments, which read something like a medicalized Twelve Days of Christmas (we believe it even scans):

24 tubes of blood drawn

1 tooth extracted

1 lung capacity

3 anesthesiologists

2 hematologists

2 oral surgeons

1 social worker

5 dental techs...

4 orderlies

3 RNs

2 physicals

and an echocardiogram.

Out of this grand list, in truth I am writing to ask that you please send your best post-wisdom tooth soft food suggestions.

And here are some additional details: until early January (and, in fact, beyond) you can send cards and letters to:

21 Woodbridge St., Apt. IL

S. Hadley, MA 01075

Once Susannah enters the hospital, she will NOT be checking email, possibly for several months. She will likely not be available by phone, either. Look for updates on this blog, and direct any emails or electronic photos, music, etc. via/cc'd to Ethan, trelevenfarm [AT] gmail.com.

While Susannah is is the hospital, mail (and CDs of your favorite music, for either relaxation, clear thinking, or both) can find us at:

Susannah McCandless

(Room number ... If you don't know the room, call 617-732-5164)

Brigham and Women's Hospital

75 Francis Street

Boston, MA 02115

-A friend has given us a Kindle electronic book reader, which stays in close communication with its parent company, Amazon, and downloads whole books in a single bound. You can suggest books or audiobooks (we hear reading may initially be too energetic!) we might enjoy via email. In a stunning marketing strategy, Amazon appears even to have invented gift cards: http://www.amazon.com/gp/gc/ref=g_gc-gc_dp_redirect.

-We have succumbed and subscribed to Netflix. Our wonderful independent video store is just too far away. Send your picks for film and television. Given the memory impairments that come with chemo, Susannah may be able to enjoy old chestnuts all over again.

-Again, send pictures or links to pictures of your life and times, and of beautiful and silly things in the world.

-While every transplant experience, and every doctor's prescribed regimen is different, if you want details on the nitty gritty of transplants, possible post-transplant challenges, and care, check out www.marrow.org, and the "patients and families" tab. The Cleveland Clinic also has a fairly in-depth set of short articles about different aspects of transplants at http://my.clevelandclinic.org/services/Bone_Marrow_Transplantation/hic_Bone_Marrow_and_Transplantation.aspx

Helping you help us helpfully

My apologies for the long delay. I think it won't happen again. I have been dragged kicking and screaming onto Facebook, and Susannah is starting to use Skype, so we should be part of the 21st century before it's over.

In the last month or so, Susannah and I have been blessed to receive an amazing outpouring of support: prayers, food, job security, money, furniture, kitchen goods, cat-sitting, tree-doctoring, landscaping, cleaning, and all manner of other things. Thank you, everyone, so very much. There is no way to even imagine negotiating all this without your love and support, in both the most general and the most specific matters.

I want to express something more than just gratitude, though. We have been deluged in generosity, and it's something we've had to think and talk a lot about. Our culture has an odd, almost paradoxical relationship to helping. “It is better to give than to receive,” as it says in Acts, and somehow this is translated, in American culture, into a notion that helpfulness is a sort of zero-sum-game, in which one person is ennobled and another is humbled. So much political rhetoric revolves around those points: the virtue of helping others, but the possible viciousness of receiving help.

I'm not trying to analyze this politically. Not here. Susannah and I have been lucky enough in our lives to be in the position to help many other people—many of you, perhaps. We have been struck, lately, at how hard it is for us to receive your help graciously when we need it, and to graciously decline it when we don't need it, or when it would be too difficult to accept.

This last point is really important, because we now have something of a timeline for Susannah's treatment and recovery. And it is one that will both require all the support you can give, over the long haul, and it will also place very serious restrictions on how we can accept that support.

OK, so...... Essentially, Susannah will go into Dana Farber in early January (we think), where she'll undergo about a week of very intense chemotherapy, designed to wipe out her current bone marrow (and with it her immune system). Then she'll be given a marrow transplant. This is referred to as “Day Zero,” and then we count up from there. For a long time after Day Zero, her new immune system will be fairly weak, and so she will be at an extraordinary risk of infection from dust and model and other vectors that the rest of us would...ah...just sneeze at. She'll be kept in Dana Farber for several weeks, at least, and probably cannot receive any visitors during this time. Then we will return to South Hadley, making frequent follow-up visits to Dana Farber. In the summer of 2010 we will likely return to Vermont.

However, for about a year after the transplant, we will be in pretty serious seclusion. We will not be able to receive casual visitors, nor will we be able to accept things like food, or clothing, or books, or really any other objects from outside our sterile world. Even things that are presumably sterile, like shrink-wrapped CDs, become one more thing to dust once they're here. We most definitely cannot accept any living things (e.g. no plants, no cut flowers, no marmots). We anticipate that most of these restrictions will taper off over time, but for many months, at least, we are going to be living “in a bubble.”

We're not entirely sure about all the restrictions will be in effect next year, but here are some germ-free things we would definitely be grateful for: electronic correspondence of all kinds, recommendations or links to books, websites, movies, and music. Pictures of you and your family and the world.

We love all of you and you are very important to Susannah's recovery, and to both of our continued(?) sanity. So we are going to have to get creative with things like Skype and Facebook and this blog and who-knows-what-else. Because we really, really, will not be able to give you a hug and break bread together. For quite a while. And even then, we might need to wipe you down in alcohol first, or just boil you for awhile.

Again, and in advance, thank you very very very much.

Lots of Good News

First- Susannah has gone through another round of biopsies, and the doctors have found the best possible results, which is to say that the leukemia does not seem to be very far advanced. This means, in effect, that starting the transplant process is not as immediately urgent as it could have been, so Susannah should be able to continue teaching for the full semester. This is nice for our sense of sanity, and also fairly essential for our insurance.

Second- We have a donor match! Two, actually. Which is great news. We still hope that people will consider register to become a bone marrow donor, and we are going to continue doing outreach work in that regard. It has been very gratifying to hear back from the number of who have registered in the last couple of weeks.

Obviously there is a very long road ahead, but as of today, things look reasonably serene.

Stem Cells 101

Cheryl has just sent me a link to an animated introduction to stem cell research. It's fun for kids and helps non-medically-versed adults to make sense of this subject, too.

We are at Mt. Holyoke

Dear friends-

We are deeply blessed to have more friends than we can easily stay in communication with at the moment. Hence this blog. We have moved to South Hadley, Massachusetts, where Susannah is teaching. This also puts us considerably nearer to Dana Farber Cancer Institute. Susannah is in the midst of a battery of tests intended to determine how far the her illness has already progressed. The outcome of those tests will effect when she needs to begin treatment....ideally not in the middle of the semester, but we don't know. While it is difficult to think clearly with so much uncertainty, we are happy here, the Mt. Holyoke community already seems incredibly supportive, and we feel like we are on the right path.

-Ethan

Registering to Donate Bone Marrow

The short version:

* If you're between 18 and 60, you can register to donate bone marrow.
* You do it at http://www.marrow.org/, and it's very easy.
* It's just a registry, they don't take your bone marrow right away (and might never take it).
* It's especially important to get people who aren't white in the registry.
* If you're pregnant, you can donate umbilical cord blood during the birth, at some hospitals.

The long version:

Bone marrow donation requires a much more precise genetic match than blood donation. To help facilitate this, the National Marrow Donor Registry compiles a database of genetic markers from potential donors, and then contacts those people if a patient who matches their genetic makeup needs marrow. Currently the registry has about 13 million people, but most of these are people of Northern European ancestry. This means that while a white person has about a 70-80% chance of finding a good bone marrow match (still far from a sure thing!), people of color have much, much worse odds.

Joining the registry does not mean that you will be donating bone marrow at once. In fact, most people on the registry are never asked to donate bone marrow, while a few people may be asked to donate bone marrow more than once. (Being on the registry does not oblige you to donate marrow if asked, and if you are, for instance, pregnant, you might not even be able to donate if asked.)

The registry is open to people ages 18 to 60. If you go to www.marrow.org, there is an on-line sign-up procedure which feels a little like signing up for any other web service. This process takes about ten minutes. There are certain restrictions on whom can donate, which they list. They will then mail you a cheek swab kit (basically Q-tips) which you mail back in, and they will add you to the registry.

The web site implies that there is a fee to sign up, but that you are simultaneously credited with a promotional coupon. This seems to be a (rather confusing) gambit to encourage you to make a financial contribution along with signing up. But if you can't or don't want to do that, becoming registered is free and is much more important.

Should you, at some point, be contacted by the registry to donate bone marrow for someone, the new procedure is generally much easier and more comfortable than the old method of bone biopsies. It is a course of injections followed by a prolonged (4-6 hour) blood draw where they take out some of your blood, find the cells they want, and put the rest of your blood back.

Another form of donation, potentially even more useful, is umbilical cord blood, which can be donated just after a baby is born. The stem cells in umbilical cord blood are especially valuable because they have not yet “learned” a body, and can save someone's life even when they are not a perfect genetic match. Many hospitals are equipped to allow such donations, which do not interfere with the birth process in any way. Some hospitals are not.

News from S & E

Dear friends-

We have difficult news. Two weeks ago, Susannah was diagnosed with a rare form of leukemia (CMML), and is now working with Dana Farber Cancer Institute in Boston. While she is currently stable and plans to teach for at least one semester at her new job at Mt. Holyoke College, the only possible cure for her condition is to find a donor match and receive a bone marrow transplant.

We are blessed to be working with a very competent and accessible team of specialists, and to have a wonderful support network. We know that your thoughts and prayers are with us, and as you get in touch we would also love to hear about what's happening in your lives. This blog is a place for that.

In the last two weeks, we have learned a great deal about bone marrow donation, and we have become committed to using our experience to improve the situation for other cancer patients. Bone marrow and umbilical cord blood donation are simple procedures that routinely save lives. Signing up to join the international registry is also simple in many countries. Even in this context, though, we see patterns of white privilege. While no one can be sure of finding a matching bone marrow donor, the chances of finding a match for a person with Western European ancestry are substantially better than those for a person of color. With your help, we hope that we can begin to close this gap, so that anyone who needs a donor can find one.
This following post provides more details, explaining how you can register to donate bone marrow and what that entails. We encourage you, if you are so moved, to forward this to your own networks, perhaps adding your own message if you feel that is appropriate.
Again, we are strengthened by the knowledge of your love and support,

Susannah and Ethan