Marje

. . .
In April, a woman I had met at the Boston breast cancer email list (bclist) get-together, Marje Scott, wrote to the list that she was having some issues with recently diagnosed brain metastases, and would be entering a hospice in Worksop, UK, for some specialized care. She said she'd keep the list up-to-date (from the hospice), and she implied that she expected to go home.

A couple of weeks ago, I emailed her and heard nothing back, so I wrote to the bcmets list asking if anyone had responded. No one replied. So I wrote to the bclist and asked if anyone there had heard from her. Over the past couple days, one of our UK members took the trouble to call around, and finally was able to call the hospice. Marje passed away on May 2nd.

She called herself "Scott the Scot", and her signature lines were:

Lang May Ye're Lum Reek.
May your roof never fa' in, and the people inside never fa' oot!

She did a video of John's and my handfasting at the Boston gathering, and kindly gave it to us. Unfortunately, the only picture I can find of her is from the back, but I will say that she looked much younger than she was, and had beautiful red hair.

I'll close with this poem by Gerard Manley Hopkins.

Spring and Fall, to a Young Child

Margaret, are you grieving
Over Goldengrove unleaving?
Leaves, like the things of man, you
With your fresh thoughts care for, can you?
Ah! as the heart grows older
It will come to such sights colder
By and by, nor spare a sigh
Though worlds of wanwood leafmeal lie;
And yet you will weep and know why.
Now no matter, child, the name:
Sorrow's springs are the same.
Nor mouth had, no nor mind, expressed
What heart heard of, ghost guessed:
It is the blight man was born for,
It is Margaret you mourn for.

For you, Marje,
May
. . .

Dead Terrys and an experimental poem

. . .
John and I went up to the Enfield Street Cemetery today. I had heard that the Terry family was big in Enfield, but the last I knew, my ancestor was an orphan who was adopted by one of the Terrys, with the assumption that they were uncle and nephew, but no documented proof. Apparently that was either wrong or has changed. My father, Arthur Booth Terry, according to Ancestor.com, is a direct descendant of Stephen Terry, who came from Wiltshire, England, and worked with the Peases, Abbeys, and Olmsteds to found Enfield. (That may be only vaguely correct, but whaddaya want, it's 1:00 a.m.)

Today Enfield vies for the title of armpit of New England, and is best (or worst) remembered as the site where Jonathan Edwards preached his famous sermon, 'Sinner in the Hands of an Angry God'. That notwithstanding, it contains many dead Terrys, many of them Revolutionary War soldiers, with very cool gravestones. (The Penelope Terry Abbey chapter of the Daughters of the American Revolution maintains the cemetery.) I have yet to fix most of them (the photos, not the gravestones or, Goddess forbid, the Terrys) in Photoshop, but since I know you're holding your breath, here is the stone of one Benjamin Terry, who died in 1773.


More, of course, to come.

I was reading on my main breast cancer list today, where one member talked about a workshop she had recently attended. One of the exercises was to write the words 'MY INNER HEALER' vertically down a page, and write a poem with the words' initial letters as the start of each line. I decided to try it, and this is what I came up with:

May is glorious month, May is

Year that breaks to tiny, glistening moments, shining now as then.
. . .

I walk by water side

Near where the cormorants fish, and diving terns collide.

Now and again I feel you there,

Earth's liquid womb and grave,

Returning, yes, returning, deep and wide.
. . .

How do I find You, Mother? Where, and when?

Earth gives the answer: die.

All must, in body

Lie in dust. Yet every living cell becomes

Earth's body, giving life in fruit and flower--

Reward enough for me, sweet by and by.

I thought this all sort of came together today, Memorial Day, although I can't swear that it isn't just chemo brain hitting me for all it's worth. Anyway, goodnight, everyone. I love you all.

May
. . .

. . .
I found out yesterday, at my treatment, that two of my liver enzymes are elevated. One is the SGPT (also known as ALT or ALAT); according to my internet research, that can actually be caused by the chemo I'm on.

The other one, LDH, is caused by cell destruction. Maybe that's tumor cells (among other liver cells?) dying too? Either that, or I've had a myocardial infarction. Heh.

I have to go visit my guru soon, so this post will be short. I'll put up the latest digital collage I did, and one poem.

This is a 4x4 inch piece called 'Sydney'. The portrait is a vintage photo, and the rest is done with my photos.


The poem is one I wrote maybe seven or eight years ago.

Ken

Pale Ken
of the hollow eyes
has no life left
in his liver.

He is poised
back against the wall
of his world
without windows
waiting for the phone
to ring.

It will be
the Angel of Death
calling collect--

one last coy slap
to the hopeless face--

one
final
affectionate
arrow
from the quiver.
. . .

Not the best poem I ever wrote, but could probably be reworked.

Well, folks, moving's exhausting, especially when you're on chemo. Wish me luck.

Namaste,
May

. . .

Hey, youtube video three is out. Agate will be thrilled to know she's now a star. Here it is: http://youtube.com/watch?v=2iyGms_a5eU

Fun stuff. :=p

. . .
I need something to read. There are no unread memoirs in the house.

I suppose I could read a novel, but I've lost faith in made-up stories.

I never thought I'd say such a thing. After all, I was an English major. And not one of those, 'ho, hum, I don't have a clue what to major in, I guess English is as good as anything else, and after all, it's easy' types of English major, either. Oh, no--I was obsessed, in love with literature, and I took every English course I could fit into my schedule. And I suppose it might have been easy to average a C+ or even a B-, but I really worked, and beat myself up every time I got less than an A.

There are good novels, of course, but I find that they're too infrequent to make me want to waste precious time searching for them. If there was someone who knew the kind of thing I was looking for, who would tell me what to read, I'd do it.

Besides, I have to buy the damn books. I compulsively procrastinate when it comes to returning library books, so libraries aren't an option for me.

John and I have been packing, mostly books, since they can go to the new house right away. Cathy and Pat are fine with us moving boxes into what I call the mud rooms, two glass-walled rooms in the back on the lower level (the house is built into a hillside, so the door is at grade level). In fact, if the two high school kids that Rhea, one of the oncology nurses at the Gray Cancer Center, referred us to actually show up, we'll be moving a 17-foot-truck's worth of stuff this Saturday. John and I are in such good shape right now, too. I went to my regular doctor's office today with a cough, fever and horrendous sore throat, and found out I have bronchitis. John had a very long atrial fibrillation attack today that really knocked him for a loop. But we are, as I always say, hanging in.

This past weekend John and I went to Caprilands, an old herb farm run for a long time by an old witch, the late, great Adelma Simmons. A nattily dressed fellow with a button that said 'Coventry Jaguar Club', probably her son, came out to ask if we needed any help, after we had browsed around in the 'gift shop' (nobody in there) and on the grounds for about an hour. When he came out, we were busy adoring the little lady below. He informed us her name was 'Agate', and the colors you see below, although the picture is obviously altered in Photoshop, are her actual colors--shades of bluish-purple and slightly reddish-tan--ergo, 'Agate'. I've never seen colors quite like these on a kitty.


Another bonus to the cleaning and clearing out when you're moving is all the stuff you find, some of which you didn't remember you had. I actually found more poems, mostly rather odd or...um...primitive. The one below was actually published in a 2002 date book called 'The Goddess in Each of Us'. It's called (surprise) Goddess' Song.

In and around the onyx cowrie
you will find Me.
Follow the silver spiral
of the chambered nautilus;

Rest, yielding,
in the soft belly
of the sunset clam.

Gain land
with the low-flown cormorant,
drying its wings
on tidal rock;

Fly high
with the terns and petrels.
On their wings
you are sure
to find Me.

It was a beautiful day here on Mother Earth. I hope you enjoyed it as much as I did.

May
. . .

I've been better...

Last night, after tossing and turning until after 3:00 a.m., I decided to take some pain medication.

I've done this several times over the past few weeks. I'll need to talk to my oncologist to try to figure out where the pain is coming from. My midsection hurts all the way around; my spine hurts, especially the lower thoracic spine; and my entire body aches in a way I can't really describe; it's not any one thing--I have joint pain, and muscle pain, and something that feels like nerve pain. In any case, I have a fairly high pain tolerance, but have felt it necessary several times to take narcotic painkillers left over from past visits to the dentist.

I do try to avoid taking the pills. Usually I get up and sit at the computer for a while, hoping that will distract me. Last night I surprised poor John on the potty, by walking in the bathroom and turning on the lights at about 2:45, camera in hand. But finally I did take the pills and went back to bed.

I fell asleep for a while, but then awoke with an awareness that there was some very acidic stuff sitting along the entire length of my esophagus. Unfortunately, I inhaled. My bronchi did not like what I inhaled, and I started to cough, which of course brought on more inhaling followed by more coughing, etc. I got up and tried to put out the fire with cool water, and finally took some baking soda in water. It was horrible.

I spent today feeling sick. I went to see my primary care physician, who suggested increasing my Nexium, and purchasing a bed wedge to reduce the GERD (gastroesophageal reflux disorder) symptoms. So I went to get a wedge, and picked up a cervical pillow while I was at it. I think they'll improve my sleep a lot.

Navelbine, the chemo I'm on now, can cause nausea and diarrhea or constipation, but is not particularly known for causing or worsening other gastric symptoms, such as reflux. Rapidly worsening liver metastases certainly could cause those symptoms. On the other hand, taking the narcotic with water, then lying down, may not have been the smartest thing to do. I guess I'll just have to wait until I see Dr. Schauer on Thursday to try to sort some of this out.

Wasn't that a cheery post?

May

YouTube Video

. . .
There's a woman named Deborah who's been putting a lot of eBay artists' work on YouTube videos. If you'd like to see one with mine in it, click here:

Mother's Day Video

Hope you enjoy.

May
. . .

You're going to be fine, just fine...

. . .
The subject of how others relate to us after our diagnosis is a recurring topic on my bcmets list for women with Stage IV breast cancer. Many women report losing friends, even best friends, very suddenly upon being diagnosed, presumably because those people simply can no longer handle the friendship, whether out of fear, or because they find it depressing, or because the woman with breast cancer can no longer be a companion in the fun things they like to do. Many say really inconsiderate things, or act like nothing is wrong; some imply that it's not as bad as you're making it out to be. Lynn wrote yesterday:

"Well, what are people expected to say? What would sound best? When I feel touchy about a topic, it seems it's a no-win situation for friends and acquaintances. Can we agree on a list of phrases that aren't offensive?"

I sent a reply to the list saying that I sometimes deal with the issue by saying to people, look, I know it's hard to know what to say. I just want you to feel comfortable talking about whatever you want to talk about. Anything people ask honestly, and out of love or friendship, I take in the spirit it was intended. As I said before, I do find it irritating when they start chirping about miracles; "they do happen, and why not to you?" (I had written in a previous email to this list that when people start talking about miracles, I've started to say you're right, miracles do happen, and I'm not giving up, but the odds are still 200 to one.) I know most people are just trying to find something positive to say. I'm usually the one who changes the subject and says, so how's your new job? how're the kids? But sometimes I wish I could just hand something like this to people:

Hello there, friend! Long time no see! Yes, I'm still May, and I still have incurable cancer, even though I "look so good" and have done so well so far! I just want to let you know that it's okay just to say, how are you doing these days? and to respond to my questions about your own life--even with (god forbid) complaints of a minor nature. If you forget that my problems are probably equally as difficult as yours and bitch too much, you don't suddenly have to gasp, blanch and stammer, oh, my god, I'm so sorry, my problems are nothing like...etc.

It really is okay to use the word "cancer" (there, there, no hyperventilating, now), and if I tell you things that imply that I might be getting closer to succumbing to this disease, it's not necessary for you to deny it. If--and only if--you want to, you can ask if there's anything you can do for me, or tell me to call if I'd just like to talk. I would prefer to hear neither about Lance Armstrong nor about your brother's wife's aunt, who died an agonizing death over a period of six weeks (never mind that that was in 1941, when palliative care was non-existent). You can talk about your vacations and things, just don't go on and on about how you've planned to visit a different European/Asian/South American/African country each year after your husband takes early retirement next year at age 52.

The last thing I want to hear is about really strange cures, such as a witch doctor pouring a strange liquid over your uncle's head in a remote village in Central America, and thereupon seeing his brain tumor rise into the skies in a puff of smoke, or an online prayer chain that saved the life of some adorable child in remote Appalachia. I don't want to hear about noni juice, colloidal silver, Essiac, or the miracle cure the government is hiding from the public, either. Offer me a Starbucks coffee instead.

May
. . .

Moving...and changing...

. . .
My friend Sue W. replied to my email about moving to a new house by saying, how could I go through it again? She hates moving.

Well, I don't enjoy it much myself, but John has promised that he'll use paid labor to do most of it, so I hope we'll get through it in relative comfort.

The fact is, it's where I want to die. In this house, I feel somewhat trapped; it's nice, but I can't just go out and sit on the deck or in the backyard and feel serene. I've enjoyed it here, planting my little herb garden, and walking up to see the animals at the farm, but I've never felt that kind of peace here. The sound of the rushing water, the view of the trees coming up from the brook below, the screened porch from which I can watch the birds at the feeders--they all make the Portland house feel totally different. I think the meetings I've had with Pat there, learning what she has to teach, and feeling her loving support, have something to do with it as well.

'Let me go, boys,
.Let me go, boys
.Let me go down in the mud
.Where the rivers all run dry.'

May

This sweet and merry month of May

. . .
The grass is green, the trees have buds, and I'm a happy camper.

John and I have done a bit of work outside (John much more than I, of course) to prepare for selling this place. I've decided it would be eminently fair for me to transplant some of my herbs and artemisias to Portland, and replace them with pretty flowers. My lungwort is in bloom and is gorgeous, and also cost me $12.00. I can take some of the sweet woodruff, lemon balm, chocolate mint and spearmint, all of which are spreading like crazy. Several of the artemisias are spreading as well. I'm definitely bringing my wormwood, since most people don't like it anyway. I'll plant some petunias, and the hummingbirds will come to welcome the new owners to the house.

I got a nice surprise Monday when this arrived in the mail:



Well over a year ago I posted on a mail art website that I'd love to receive postcards regarding breast cancer, and in return I'd post them on my blog. I received one in April of '06:

http://mayisripening.blogspot.com/2006/04/bc-postcard-has-arrived.html

To my great surprise, one year later, this one arrived. I think it's absolutely wonderful. Thank you, Danielle! I only hope you have no personal experience with breast cancer yourself.

I have my second Navelbine treatment tomorrow, which is John's birthday. What a great thing to do on your birthday, huh? Take your lover to chemo! But I have given him a model airplane, which is what he wanted, and I also have another surprise for him, which I'll photograph when he opens it, and post a picture here.

Those of you in the northern hemisphere: enjoy this beautiful month!

May
. . .