Escape from Alcatraz

More good news, Nancy is home!

It was a little sudden for us, too. On Friday, her doctor looked at her blood counts, which have been skyrocketing since the Wednesday lift off. Everything was up to within normal ranges, apparently Nancy has set another world record with her recovery rate. So, I came over with a big suitcase yesterday, we packed her up, altar, books, movies, hats and all, and got home yesterday evening.

We picked up a new car on the way home, but that's a story for another day. In the mean time, we should know if her brother or sister can donate bone marrow within a couple of days. Some levels of the waiting continue. But she's home, she can go back to work, and that's a big step.

With love,

-tdc

Rainbow Day

Friends, we have good news.

Nancy's blood counts have finally started to climb. She's been neutropenic, at risk of infection for the 5-1/2 weeks she's been in the hospital. All that time, we've been working towards this day. Her ANC (neutrophils) jumped from 0.01 yesterday to 0.58 today, and the threshold for neutropenia is 0.50. Her WBC (white blood cell count) is up to 700 from near zero, well on her way to a normal value over 4500. These are probably the highest numbers she has had in months. If everything proceeds well, she should be home in a week to 10 days, to recover her sanity and strength.

There was a fabulous rainbow visible from the hospital this morning, and Nancy sounded upbeat on the phone even before we got the news about her blood. I feel like I've turned a corner in myself, and I cannot imagine how she feels, beyond the vast sense of relief that the first difficult wait is over.

In a few days, we should know if her brother or sister are a match for marrow donation. In the mean time, I'm taking myself out to lunch to celebrate.

Warm regards,

-tdc

Waiting

Now we are in the Great Wait, actually just the first part of it. We trust that the chemo has put Nancy into remission, but we don't actually know. We trust that a matching donor will be found, but we don't actually know. We trust that the neupogen injections each day are causing her stem cells to rally...but we don't know that either.

The neupogen treatment takes 7 to 14 days to start to raise her blood counts, and today is day 7. Counts are all still the same, low hematocrit, zero neutrophils, platelets bolstered by transfusion. Today we talked about 'what if the treatments don't work?' That would probably mean that the chemo has not put her in remission, and more chemo is ahead.

It's easy to focus on the "what if's", let our fears run the show. But that isn't being present, and even worse, it's putting our energy into exactly what we don't want.

So today we breathe deeply, let our breath bring us back to ourselves in the moment, and trust. I just open to my faith. The treatments are working, Nancy is in remission, and sometime this week, her stem cells will activate, and explode into production of all her blood components. Her numbers will climb, she will be able to come home soon, and we will find a donor.

We should know if her brother or sister are a match sometime this week also.

Please keep us on your altar, and in your heart. This is the week when rebirth becomes possible for her immune system, her self-nourishment. Help us wait.

love,

-tdc

This week (from Nancy)

Thanks to all of you for calling me, and visiting me, and donating blood for me.  I like it when the blood comes with a red tag, and it says "designated donor", so I know it's from you.  That always makes me feel very held and connected.

For the most part, I've sailed through the second, heavier round of chemo without any problems.  I've been a bit more tired than usual. The doctors are all very pleased with my progress, I've become the boring patient on the floor.  If all goes as planned, I'm in remission for a few months, and will be going home in about two weeks to recover, get back into my life.  The stem cell transplant should happen sometime around April. 

Yesterday I was a model patient for a photo shoot for UCSF.  They are introducing new uniforms, and they wanted pictures of nurses in the uniforms with a patient.  I was miss fashionista, with my scarves and pajamas.

It's been a bitter sweet week, as Vangie's funeral was on Monday.  I was able to hear the service, thanks to Tom, and I was able to help organize the reception afterwards.   A lot of family friends that were here for the service visited me yesterday.

I've liked the time to listen to music, in many ways it's like going into retreat space.  There's this whole thing about feeling both connected and disconnected.  I've had the opportunity to connect with friends I haven't seen in a long time, and I've had time to talk with them.  I also feel like life is happening around me, and I'm missing out.  I don't feel as vital, I miss working.  There is something about stillness and contemplation, attachment and unattachment.  It's pretty easy to give up all your physical belongings, it's easier than I thought.  For the most part, this little room has been home, and I'm pretty comfortable in it.  I think I miss engaging with nature most of all.

With love, gratitude, and an open heart,
Nancy

Adaptability

Late night greetings, everyone. I hope you don't mind some mental ramblings.

Round two of chemotherapy ended today, and again, Nancy is doing well with it. No reactions, rashes, or real discomfort so far, although the next couple of days could be different. She got two more units of whole blood this evening to keep her hemoglobin levels up, one a directed donation from her sister-in-law Karen Kristensen. It's special to get gifts like that. She now has bits of Edward Nattenberg and Karen and myself orbiting in her veins, along with the dozen unknown hero donors who have volunteered some of their essence.

I've had a couple of hours of sleep tonight, squeezed next to her on the hospital bed, and it's time to let her have the whole thing so she can settle fully into herself. I'm unable to reenter dreamland on the rack, er, the pull-out chair that doubles as a bed for guests, So I've been contemplating the nature of our adaptability as human beings.

It's quite astonishing how we mold our world; sitting on the 11th floor of the hospital, on the northern slope of Mount Sutro in San Francisco, I am looking out the window at miles of transformed landscape, continuously coated with a dense fabric of buildings and roadways, lights, churches, moving cars. It's also amazing how we adapt ourselves; Nancy and I have created a cozy home away from home, with nothing more than some altar objects, an LED candle, our laptop computers and iPhones. We can feel ourselves as a connected couple in this structure of healing technology, to the point that we bicker as always. She has even created big parts of her outer life here, coaching a workshop, and becoming command central for Vangie's funeral on Monday.

Our complexity is key. Simple organisms cannot adapt to changing environments. Fortunately, leukemia cells are simple, and the intense levels of chemo drugs are more than they can tolerate. The process of programmed cell death is called "apoptosis", and it's the malfunction of that process that allows leukemia cells to multiply. The genetic error that creates leukemia should never have been allowed to propagate in the first place.

Apoptosis. I love the word, as it sounds like something exploding. As the chemo hurries leukemia cells to their timely death, I imagine Nancy in a popcorn haze of apoptosis, thousands of little leukemias committing suicide each minute. Thank god for their simplicity, their inability to adapt to cytarabine and daunarubicin.

And thank god for Nancy's adaptability and determination, not to mention my own. Perhaps I can adapt to the rack now, which has adapted to the shape of the hundreds of humans before me, that have slept here as they watched their loved ones go through this trial. It's too bad they all seemed to be only five feet tall, as the hip and shoulder indentations require me to adapt in some odd ways in order to find sleep :-)

The ventilation sighs, Wallie the IV softly chitters, and apoptosis crackles under the covers nearby. I can sleep with that.

With love,

-tdc

The Himalayan Hike continues

Hi, all.

This is a newsy update, as we continue our trek through the annals of medicine and biochemistry. Nancy's first chemo round did not put her in remission, so she started chemo round two about 24 hours ago. This is a shorter, more intense round, lasting three days I believe. I understand that this round should knock her leukemia cell production down to the point that her immune system can recover some function. Unfortunately, I haven't gotten to talk to her attending doc, Dr. Andreatis, so I don't know the full scoop.

We expect this will take about another 3 weeks (she's already been in the hospital 3-1/2 weeks) and the long stretch in the hospital is hard for her, as you might imagine. She will get a break after this, assuming all goes well, as her doctors want to get her home for some recovery time, to prepare for the stem cell transplant. And to recover her sanity.

Her brother gave a blood sample for testing today, and her sister will be doing the same early next week. The stem cell match results will be available in about 10 days for him, and 14 days for her, so we will know more about where we stand about finding a donor in mid-February.

On a different note, we have another loss in our lives. Nancy's stepmother, Vangie, passed away last night, after several years of decline with Alzheimer's, and several months of skilled nursing care. Her Connecticut family is gathering out here for the funeral early next week, which Nancy of course cannot attend. I'll be there.

I also attended the funeral for my ex-wife's father Edward Malcolm on Wednesday. He was a fine, loyal, opinionated man, Armenian descent, native Californian, WWII B24 bombardier, Star Trek fan. May he rest in peace.

2011 has been about non-stop loss and change so far. I'm too sad and fatigued to do the dreamwork at the moment. It's hard to lose the ones we love, but for me right now, it's harder to see those we love in prolonged discomfort, receiving a poison as a cure. Reminding me of my favorite mantra

Om asatoma sadgamaya,

tamaso ma jyotir, gamaya

mirtyor ma amritam gamaya

My loose translation, forgive me, my Hindu friends:

Oh, great unknown divine,

lead me from the unreal to the dawn of knowledge,

from the ignorance of my incarnation to illumination,

and transform my poison to my nectar

-tdc

Bone marrow donation and transplant info

Several folks have asked me for more information about bone marrow donation. I'm rapidly becoming an expert :-) Just press the delete key if you are not interested.

The first thing to know is that you cannot donate to Nancy, or be easily tested just to donate to her. She needs one donor, who is a perfect or near-perfect match. The odds of one person matching her are 1-in-20,000 or less. Her donor will be either her brother or sister, or someone in the pool of a quarter-million registered donors that matches her.

I've asked folks to become registered bone marrow donors to support the system that will save her life. This is a "pay it forward" system...someone who registered last year or last decade is likely to be her donor. And as I've said before, the odds of getting selected as a donor are tiny. But if you are, you can save someone's life.

The second thing to know is, we are really talking about a stem cell donation and transfusion. This is not a transplant requiring surgery, like a kidney or something.

The donation is actually composed of neutrophils (one kind of white blood cell) and stem cells, which circulate in your blood along with all the other cells. You can think of your blood circulation system and bone marrow as one big organ, where the individual parts travel freely through your body.

If you become a registered donor, and happen to be one of the few who someday match a patient who needs stem cells, the donation can be done in two different ways. 95% of stem cell donations are "peripheral blood stem cell" (PSBC) donations, which are done at a blood center or outpatient clinic. Basically, you get a needle in each arm, and are hooked up to a machine similar to a plateletpheresis machine, which takes your blood out of one side, removes the neutrophils and stem cells, and puts it back in the other side. The donation takes several hours.

(Some people cannot donate this way. So a small percentage of donations are done by removing marrow from the pelvis of the donor, using a big needle and anesthetics. But nearly all are PSBC donations like I describe above.)

For 5 days before the donation, the donor will get a shot of Neupogen each day, a drug to boost your stem cell production. It takes about 4 weeks after the donation for your neutrophil and stem cell levels to return to normal. The article at marrow.org (http://www.marrow.org/DONOR/When_You_re_Asked_to_Donate_fo/Steps_of_Donation/index.html?src=Steps#step2) says that you will recover quickly, go back to work in 1 to 7 days, and feel completely back to normal within 2 weeks.

During the 5-day Neupogen treatment, the donor may have headaches or other aches. This will vanish as soon as you make the donation.

The transplant is done just like a normal blood donation. The unit of neutrophils and stem cells is given to the patient just like a unit of blood, through an IV. The stem cells find their way to the bone marrow, settle in, and start doing their job. Along with the donation, the patient gets a whole new immune system, which will attack any remaining leukemia cells in the body. The patient will also get some medication to control any reactions during the period when the donation is taking effect.

It takes 10 to 14 days for the stem cell transplant to work, and for the new blood and immune system to take over. Nancy will be in the hospital for 4 weeks when she gets her stem cell transplant, one week to get the chemotherapy that will kill all her bone marrow and stem cells, and to recover from the chemo, then three weeks after the transplant to enable the transplant to take effect.

The chance of the donation being accepted and becoming effective is something like 75 to 85%.

If you’ve gotten this far, I congratulate you. Let me know if you have more questions!

-tdc