Sunday, December 26, 2010

The Season For Giving

December is usually the best month for trips to the mailbox.  Passing over my own failure to pull it together and get cards in the mail this year, I enjoy envelopes full of pictures of smiling families and holiday wishes.  However, as I carry high-deductible catastrophic insurance, and have spent much of the past four months either in the hospital or receiving expensive outpatient services (many of which are not covered by the policy), well, let's just say a lot of my mail isn't all that joyful right now.  The good people at Mercy Hospital saved my life, and I don't bear any resentment at being asked to pay them for it, but it isn't the fun part of the whole experience.  In fact, despite all the virtues of having been through treatment for AML, the word "fun" doesn't really apply. Despite the near-comical nature of the numbers tallying up in the liability column, I have never been more aware of how wealthy I am.

When I was first hospitalized, my sister drove up to stay with the boys and cook me food. My friend Amy, a woman who has only seen me once with hair, filled up her car with food from her farm and dropped it off at the house.  My sister said she must be the nicest person in the world (and she may be right - check out Amy and Jeff over at Buckwheat Blossom).  Another Amy, also a farmer (check out Wolf Pine Farm, too), brought her girls up for a playdate and made lunch plus piles of leftovers.  Jan and Rob of Goranson Farm load me up with produce whenever I see them, and have made a donation of much of my summer's balance (and they won't let me pay them the rest until after I get the final good news from the doctors).  My parents, relatives, dear friends old and new, friends-of-friends, friends-of-parents, and on and on, have given so much in time and nourishment that our family could be supported and fed this fall.  I have already written about the many amazing women who have donated breastmilk for my youngest.  It will be a feat to return any of the favors or pay even a small fraction of them forward.

Cancer treatment isn't something a person can go alone.  People often remark to me their amazement at my physical and emotional strength during this process; how could it be otherwise with the support that I have had?  The Christmas presents are all opened; despite my protestations that I have received more than my share already, there were many for me under the tree.  Why?  Because people want to give, if they don't feel bullied.  It is human nature to reach out, in times of challenge and in times of joy; we have to be conditioned not to be charitable.  One of the greatest gifts I have received is learning to receive; to allow friends and neighbors to share their gifts and to participate in the healing process.  Asking for help, and accepting it, is a way of acknowledging the human web that is our community, across the street and across the ether of the internet.  As a neighbor's note on my refrigerator says: "call me.  I want to help."  Inviting that help is a chance to share the rewards of this journey.

My mind is occupied these days with more ways that I can do that; more on that to come in future posts.

Saturday, December 18, 2010

A Complaining Song

"It's a very funny thought that if Bears were Bees,
They'd build their nests at the bottom of trees.
And that being so (if the Bees were Bears),
We shouldn't have to climb up all these stairs."
                                                          A.A. Milne
This is Winnie-the-Pooh's Complaining Song, shortly after which he falls out of the tree and lands in a gorse-bush.  I think that, if I can express the challenges of my recent illness in as gentle a form, I may consider it a triumph.

This is a PICC line (not mine):
This is a bone marrow biopsy needle:

The PICC line is a catheter that goes from the arm into the superior vena cava, which is immediately above the heart.  During my chemotherapy, I received two drugs: daunarubicin and cytarabine.  These drugs are so toxic that the nurses wear gowns, eye shields and double or triple gloves to hang them, and they are so caustic that they cannot be put into the veins in the arm.  Due to my infection risk, I had to get a new PICC put in each time I went to the hospital, which is a minor surgical procedure requiring lidocaine.  No big deal.  Nor is the daily blood draw, typically taken between 5:30 and 6am, or the draws between treatments, or the pee-collecting hat in the hospital bathroom for measuring intake/output (chemo is very hard on the kidneys).  The biopsy hurts like hell, but only for about half a second; I get a shot of lidocaine before that, too.  During my first stay in the hospital, I received a daily shot of nupogen, too.

It's the little stuff that wears.  I can easily handle all of this; certainly there are many people in the world who endure much more for much longer, without complaint.  And I don't have much to complain about, given the rewards of going through this treatment.  Nonetheless, you wouldn't believe me if I said it was all fun and games, so I thought I should indulge in a brief Complaining Song.  

How is this part of the nourishing path?  It's an amazing opportunity for returning to center.  Again and again.  There were mornings when I was able to genuinely welcome the blood draw as part of my healing process.  I have already made it through three biopsies, so I know I can manage one more.  The regularity of these inconveniences has helped me to realize how little of my time is taken up with them; most of the time no one is sticking a needle into me, most of the time I don't have to pee in a plastic collection basin!  The actual discomfort is very brief; I can relive it all the time or I can be grateful for the chance to see how easy it is to dwell in the negative, and how unnecessary and self-destructive. 

When I say that I feel good, when I said that every day of my treatment (except for the afternoon that I ended up in intensive care with a septic infection - that day I felt bad), it is the truth.  I DO feel good; indeed, I was anticipating feeling much worse on the chemo than I ever did.  Sure, when this is all done I am likely to feel better than I felt in the hospital, than I feel now, with the exhaustion and the head-rushes and the lack of oxygen.  Considering that I was dying when I entered the hospital (my osteopath, the amazing Magili Quinn of True North, said that she could feel me slipping away when she did a treatment immediately prior to my hospitalization, whereas now she says I feel heavy and present), I feel really good.

Winnie-the-Pooh is frustrated in his first attempt to steal honey from the bees, so he devises a complicated scheme for deceiving them.  When this effort also appears to be failing, he realizes that he doesn't want the honey after all, at least not from that sort of bee!  I had planned to be healthy this past fall, had planned to enjoy the smoke-scented amber air of autumn in New England.  It turned out that what I needed even more than that was to spend a lot of it in a hospital bed, enjoying the HVAC in a room with sealed windows.  Our plans only seem disrupted if we are attached to what we thought we would be doing with the time; in fact, what's happening is the beautiful reality, if we can see it.

I will leave you with my mantra, which I would recite to myself as I walked the hospital halls in the evening, pushing my IV pump:

I am rooted in the earth
The salt of my blood is the salt of the sea
I am whole
I am well
I am on a journey to my higher self
I am healing
I am weak like the water; I flow

Sunday, December 12, 2010

Disconnecting, Reconnecting

The first night I spent apart from my children was the first night I spent in the hospital.  For four and a half years of nights, without exception, I had slept next to my babies.  My older son weaned the day after my younger son was born, so I had also been nursing every day and many nights for that window of time.  I sat in a hospital bed on Friday, September 3, 2010, and held my eight month old infant to my breast to feed him.  It was to be the last time he ever latched.  That night, instead of cradling my suckling son, I slept alone on a vinyl mattress while an IV pump whirred and hummed toxic chemicals directly into the vein above my heart.  Lysander had his first bottle while John and Wallace ate pizza with friends. 

Breastfeeding is nourishment in so many ways other than nutritionally.  It is a connection between mother and baby that unites us to all mammals, to the original mammals.  It is unique to the relationship of mother and infant, the milk changing in quantity, consistency and constituents to adapt to the needs of both.  It is profoundly intimate, utterly exclusive, and for me, quite suddenly completely over.  I had nourished my soul on the breastfeeding of my babies.  Losing that relationship with my son opened up an opportunity to experience a level of human generosity that is astounding, even as it is the only part of this illness that has made me weep in bewilderment and loss.

 In the week that I spent assessing myself and my options before deciding to undergo chemotherapy, my primary concern was that I would not be able to nurse my son.  Even before I put myself in the hospital, I wondered if I might have to stop breastfeeding in order to heal, or if non-allopathic therapies might make my milk unsafe for my baby.  One of my midwives had a baby this past spring; I called her and asked if she might be able to pump extra breastmilk for my son.

Midwives must be among the most generous people in the world.  They give of their time and their hearts in one of the most important periods of our lives, and they ask very little in return.  Brenda, Lindsay and Maureen of  Sacopee Valley Birthing Services are amazing; both my babies were born at home with their assistance and care.  I could go on and on about them, but I will save it for another post.  Suffice it to say that they were the first people I called when I realized I was going to need donor milk.

When I returned from the hospital after three weeks, Lysander would not latch on.  He had completely forgotten.  I tried supplemental systems several times, and then I tried to pump.  The chemotherapy reduced my supply to almost nothing, and my milk was too toxic to drink 25% of the time.   I rented a hospital-grade pump and tried to keep up some supply, supplementing others' milk with a few ounces of my own, lugging the pump to the hospital to keep pumping during treatments, but still my milk disappeared.  I read books on herbs and bought tinctures.  And then I stopped.  I returned the pump and acquiesced to the situation.
I am so grateful.  My son, having never had a bottle or slept anywhere other than in my armpit, immediately took to this new form of nourishment.  He has bonded with my husband as the primary parent, and it is beautiful to watch.  He is happy and healthy and he has had the opportunity to connect with people in a different way than before, and he has not been traumatized by my absences.

And the milk fairies!  I have experienced an unrivaled display of the depth of human connection, in the way that women have come together to help me continue to provide breastmilk to my son (I have been in treatment since the beginning of September, and he has never been without milk!).  I cannot express the depth of my gratitude.  Lysander and I have reconnected as my presence has grown more dominant again and my absences briefer, and I am able to be present in a new way because of what I have learned.  He and I have both been nourished by the milk of human kindness.

Sunday, December 5, 2010

What is the nourishing path?

Can cancer be a nourishing path?  In my case, it is acute myeloid leukemia, eminently treatable in theory, but not without its consequences.  While it is a cancer that generally affects older people, between six and seven percent of cases occur in people 20-34. 1 Few people know what AML is.  I was completely unprepared for this.  Or so I thought. 

AML is a tidal wave of an illness.  It comes on hard and fast, depleting the body of infection-fighting and clotting ability.  For this reason, it also kills fast if untreated.  I won't bore you with the details; the Leukemia and Lymphoma Society is happy to do that. 2  What I plan to bore you with instead is my journey on this path, and I hope that others will join into discussions here about their own journeys, whether with illness or just with the various paths in their lives.  My focus is on the nourishment we receive and create, for our bodies and souls, as we become aware of how little is in our control.

Leukemia has been a tremendous gift to me.  When I received my diagnosis, I was stunned of course.  My diet and lifestyle are nearly pristine - sanctimonious even.  How could I get cancer?  Furthermore, as a nursing mother of two young children, at the time four and a half and 8 months, how could I possibly manage an additional responsibility as large as healing myself from an acute and fatal condition?  In posts to come, I plan to discuss my response to the diagnosis, my choices about treatment, and my experience with the illness, but I would rather not start there.  To me, it is not the salient feature of the past several months.

Cliches abound as to how "life is about letting go." "If you want to make God laugh, tell him your plans," right? How often, and to what extent, to most of us really take this advice to heart, though?  We need our plans to help us make a mental path upon which to embark, but then we become attached to this path, often finding ourselves hacking away at the underbrush, soaked with sweat and harassed by flies, hungry and tired, in order to try to continue in the pre-determined direction when the mossy track is quite clearly bending in another direction.  Sometimes, however, we come up against an impassable barrier to our plans.  In my case, the wall was cancer, and I had to turn aside.  Imagine my surprise at seeing the mossy track right there, beckoning me to follow, if only I could let go of my preconceptions!

Hence begins the nourishing path of leukemia.  It is a section in a lifetime of nourishing paths, but it is the dominant one right now.  It has made clear my interests, planted a seed for a possible direction that my life might take professionally, pushed me even further into my interest in wholesome foods and their pre-eminent importance in our lives, and helped me let go of many nagging judgments about myself and others that were simmering, unacknowledged, below the surface of my psyche.  It is making me a better parent, a better partner, and a better person.