Update, 7:00 p.m.

My sister had said that the exploratory procedure would likely be done first thing in the morning. The GI specialist said, no, because my mom was still so bloated that they might damage the colon. By noon, they had gotten the swelling down far enough for the procedure and ...

The GI doctor utterly disagrees with the "other" doctor -- sorry, I don't know what the "other" doctor is. First, he is not convinced that what they see on the CT scan is, in fact, a mass. He thinks it is most likely a kink in the colon. Second, he really doesn't think that it involves the ovaries.

The GI doctor recommends an immediate laparoscopy, with possible removal of the affected area of the colon. My sister asked when that would be done; he couldn't tell her. Today? I really don't know. What does immediate mean in the world of hospitals, if it's not going to be done as soon as possible?

I know what it means: The disagreeing doctors have to get together and figure out how to cover their respective asses while deciding what to do about my poor mother. The good news is that she has finally allowed them to give her morphine, so she's resting more quietly. The bad news is that ... we have no news.

(GI = gastrointestinal)
I have had several posts written in my mind over the last several days. I might as well put them all here.

Post #1: Tuesday

My mom is in the hospital, and I'm worried. She hasn't been feeling well for a week or so, and Jane says she has been refusing to eat or drink for 4 days now. Mother says it hurts, it's just her usual GI problems, and it will get better. Well, it hasn't gotten better, so Jane has taken her to the ER; there is clearly some intestinal blockage because she is bloated and in pain.

Initial blood tests have ruled out an infection, so the three likely candidates, in ascending order of severity, are --

1. Acute constipation
2. A kink in the colon
3. A tumor

My sense of likelihood: 3,2,1. With any luck we'll have a diagnosis tomorrow afternoon. The not knowing is terrible. The gut feeling is worse. I really hate this: Hold us in your prayers.

Post #2: Wednesday

Part 1. The diagnosis is in: Constipation with an attitude. That's what the nurse told my sister. They will do an endoscopy on Friday to rule out other problems, but right now the doctor's concern is to -- ahem -- clear the way for that procedure.

Part 2. I've been talking with God a lot the last 24 hours. I told him that he would have one pissed-off widow to deal with if he wasn't careful. And one thing is very clear: DON'T PISS OFF THE WIDOW.

Of course, I had to back off: My mother's health is not about me. It is not about me. When Jane got sick earlier this year, I realized that I had reached the stage that the widow board refers to as Beyond Active Grieving. I don't see everything through the lens of my grief; widowhood is no longer central to my identity; the world is NOT ABOUT ME.

I could look beyond my sadness and really be there for Jane, not see her illness as yet another thing happening to me. But when it was MOTHER ... that was a different story.

Dammit, God! I need her. Don't you do this to me!
Whoa. Back off, Pentha. This isn't about you, remember.
Okay, you're right. But, jeez, you really had me scared there.

"Constipation with an attitude": I love it. Let the poop jokes begin.

Post #3: Thursday

Crap. Crap crap crap crap crap.

Mother didn't respond to the hydration and stool-softening treatment. She's still blocked, so the doctors did a more detailed CT scan. A mass is pressing up against her colon. Based on the location of the mass, there are three possible sources: her liver, colon, or ovaries. The doctor suspects an ovarian tumor.

Tomorrow they will put a little camera inside to see what's going on; then they will discuss options with my sister and mom; then we go from there.

Meanwhile, I'm shuddering with fear and tears, trying to remember that this is not about me.

Whoop, Whoop

On Saturday we went to Hornsea Mere, which is reputably the biggest pond in Europe, or something like that. We were lucky enough to see a Mute swan with it's cygnets and also the much rarer Whooper Swan.


The Magnolia Spa Pedicure:
This treatment is designed to address the concerns of dry and rough skin on feet and lower legs. In addition to our regular pedicure, this service includes treatment with an orange peeling cream containing natural silica beads (a gentle exfoliation scrub), a seaweed masque, relaxing foot massage with a nourishing beauty spa cream and an essential oil, and a paraffin treatment.

The description neglects to mention that one is seated in a full-size electric massage chair while all these wonders are being worked on the feet.

Bliss. Thanks for coming with me, Beata!

New Home Here I Come

Well its official... I get the keys to my new house tomorrow. Now all i have to worry about is moving all my stuff, which will be Fridays problem :) Really looking forward to moving though, because now to get to work all i have to do is walk 100m down the road and I'm knocking on my office door. In turn this means i now only have to get out of bed at about 8:45 to get to work by around 9:00 ish. Also no longer will i have to sit in the traffic in the morning. I will post some pics of the new place so you can all see.

In other news..... I will no longer be trekking down to durbz for the long weekend, as i found out today that Rhain will be out the country and that was my lift down. so will have to see if i can make another plan for another time.

Anyway Hope you all well...


How bizarre is this?

Mary and her husband have been attending my parish for 4 or 5 years. (I say "attending," because they haven't joined and they don't participate in any of the events outside of liturgy.) She came up to me during coffee hour this morning and said,

I'm so sorry about your husband.

I can only imagine the confused expression that must have covered my face.

Your husband, who died 3 years ago.

Oh, yes. Thank you.

What the hey?

I mean I always saw you with your kids and I knew that a deacon had died, but I didn't know he was your husband. And I wanted to tell you how sorry I am.

And she's smiling, like she's so proud of herself for figuring it out. Ohhh-kaaaayyyy.

Thank you. I smiled back at her and continued on my search for Rock.

This woman has been standing one row behind me and the boys for 4 or 5 years, and she's only now realized that Deacon Nicholas was my husband? Good grief. Actually, to borrow a line from a friend, There's nothing good about grief, and this woman really got under my skin this morning.

So, we went to Filey Brigg, and whilst I took photos of birds, wifey caught critters in the rock pools with the kids. Who do you think had most fun?

Random things

  • Lots of my blogging friends are on weight-loss programs, but I don't want to be accountable to y'all. I don't want to publish a goal and have to report back. So I'll just say that I'm trying to -- wish me luck.
  • Ron has returned to his blog; so I've put his name back on my link list.
  • Is anyone in touch with Sandy? I know why she closed her blog, and I would so like to know how things are, how she is.
  • I am ...

  • Merlot

    Smooth, confident, and popular - I'm the type most likely to order wine for the whole group.

    I seem to breeze through life on my intuition and wit. And no one seems to mind!

    I'm comfortable in any social situation I find myself in, and I never feel outclassed.

    And while I live a charmed life [ed: Yeah, right!], I never let it go to my head. I am truly down to earth and a great friend.

    Deep down I am: Balanced and mature.

    My partying style: Surprisingly wild... when I let loose, I really let loose.

    My company is enjoyed best with: Some greasy pizza.

  • A few of my IRL friends are facing the imminent deaths of parents and parent-figures; I want to be supportive, but really -- "At least his/her suffering is over ... she/he lived a full life ... his/her work on earth was done ... she/he is always with you in spirit ... call me, anytime, whatever you need, really, let me know how I can help."
  • Our parish food festival is next weekend ... and I really don't want to help. I barely even want to go. The food festival is always Labor Day weekend, and I want to do SOMETHING ELSE. Ugh, the guilt.
  • School starts in 2 days, 16 hours, and 17 minutes.

The beautiful Peaseholm Park in Scarborough.

Why does he call you donkey?

eeaw, eeaw, eeaw he always calls me that.

A couple of Turnstones doing their thing.

Feeling so virtuous ...

Yesterday I
  • Folded all the laundry
  • Scrubbed all the bathrooms (3.5)
  • Cleaned the laundry room
  • Scrubbed the laundry room floor and the hall from the garage to the family room
  • Entered ALL the receipts from our summer travels into Quicken -- that took more than 3 hours!
  • Got the boys to pick up and vacuum the family room
Dang, I'm good!

Today I will reconcile the summer's credit card statements. Blyeah. Then I'll put away all the laundry I folded yesterday (actually, Rock has already put his own away... now to get HardPlace to do the same).


This is Jack, we met him at Goathland. I've never read a Harry Potter book or seen a Harry Potter film, but I do know that some of the film was filmed at Goathland station, maybe Jack was in it, does anyone recognise him?

Rocks for sale! ... and other stuff

HardPlace got into rocks this summer, totally into them. He got (either as gifts, or with his own money, or from his own scavenging) quartz, amethyst, hematite, turquoise, limestone, shale, petrified wood, coral, mica, granite, pumice, pyrite, malachite. Rocks, rocks, rocks.

Back home in Maryland, he found a big ol' rock in the back yard and hammered it in two with a chisel. Surprise: Quartz! First, he shaped a few arrowheads. Then he smoothed a few chunks into interesting shapes. The he attached one of his arrowheads to a nice straight stick and made a bona fide arrow. Then he wrapped picture wire around a few pieces with a little loop on top to make pendants.

Then he set up shop: He built a table with stray wood pieces. He wrote prices for everything. He hauled it all to the sidewalk. And Rock started calling out to passing cars and pedestrians, "Rocks for sale! Rocks for sale!" Thank goodness for generous neighbors: I think HardPlace earned $1.50 for his efforts.

That success brought forth an entrepeneurial spirit. HardPlace and the boy across the street started coming up with ideas for earning money. Neighbor #1 gave them 25 cents for each trash/recycling container they dragged from the curb to the house. Neighbor #2 gave them 50 cents for each grocery bag of pine cones. Then they raked and bagged all of Neighbor #2's leaves and each earned $5.

HardPlace's business partner is out of town this week, so he's turning elsewhere for amusement. He and Rock are actually learning how to be brothers: Rock is growing up enough that the two of them can share interests and work together on projects. They can sit together playing Matchbox cars on the computer or building Legos side-by-side. One day last week, I heard HardPlace say something I never ever thought I would hear: "Please come outside and play with me, Rock. PLEASE."

School starts in 6 days, 22 hours, and 43 minutes. Not that I'm counting, mind you. Of course, I cannot wait to have breathing space for myself. But I am also going to miss the boys' sweetness around the house. This has been such an amazing summer for all three of us.

We are all 3 so much happier than we were 3 months ago. The trip out West was an amazing thing for us. We had fun. We relaxed. We enjoyed each other as family. We enjoyed being with extended family. We all three grew up a little bit.

Now we need to settle into a new routine. I am going to find a piano teacher for HardPlace: He actually asked me to help him learn. I can teach him the notes and finger positions, but I have no idea how to teach anything beyond that. I am going to find a gymnastics class for Rock: That child has a natural grace and phenomenal body strength. I have got to direct it and channel it. Part of me wants to enroll both boys in both things, but I think that for now they each need something they can do apart from the other. We'll see.

And I'm going to be determined about using my ellipitical trainer. Several of my blogging friends have embarked on weight-loss plans, and I really need to as well. We got a lot of good exercise in Arizona, walking, hiking, swimming: That felt good, and I want to continue with that. Last week, I loaded all our bikes into/onto the car and dropped the car off at the dealership: We pedaled the 6.5 miles home. It was exhausting for the boys, but it was also GREAT: We were all proud of ourselves.

Finally, once we are settled and established, I need to get serious about "what next?" It was so good to be with my family; it would make so much sense for me to move out to Arizona from Maryland. But I hate making that decision: Leaving behind so much that I hold so dear. I'll say more about all this another time.

For now, I have other things to do: bathrooms to scrub, laundry to fold, children to harass, blogs to read. I love you all madly.

Sea level

and this is the view as you leave the harbour.

All right, already!

I have now been tagged for this meme three times (Trish the cheater, Michelle the plagiarist, and Marsha who has yet to earn an appellation). I guess I'd better do it.

Eight Random Facts About Me
  1. The first poem I ever memorized was A certain slant of light by Emily Dickinson. I was in 6th grade and had never read anything so beautiful; it still brings shivers to my soul. (Neither the reading nor the memorizing was a school assignment, btw.)
  2. When I was 12, I did a handstand against the front door -- and put my heel right through the door.
  3. I fulfilled my language requirement at Northwestern with the highest score ever recorded on the Latin placement exam.
  4. Ten years later, it made Nick crazy that I couldn't translate half the Latin we encountered in books, movies, monuments, museums, etc.
  5. I was totally done with, through, finished with, and out of menopause by the time I was 34.
  6. I attended my first Melkite Divine Liturgy in 1984 in Ibillin. I was staying in the home of now-Bishop Elias Chacour for 3 weeks, helping him prepare for summer camp for hundreds of children.
  7. Ten years later, Nick and I started attending our local Melkite parish regularly; we switched rites in 1998, before HardPlace was baptized.
  8. I am the reigning Queen of Cherry-Stem Tying -- that is, tying the stem with your tongue (mine is on the right).
Having delayed doing this meme means that there are precious few folks out there who haven't been tagged. I'll be wicked and tag eight of my NON-blogging readers -- Aliene, Taina, Beata, NJN, Ron, ElizabethP, and my unidentified (but known to SiteMeter) readers in Fayetteville (Arkansas) and Durham (North Carolina). Since you don't keep a blog, post a comment and tell us about yourselves!

and when we looked down from the top of the 99 steps, this is what we saw. Later in the day, Katie and me walked the full length of the furthest pier. The last bit can be quite scary, especially if there is any wind, but I was ok because Katie held my hand.


When we got to the top of the 99 steps we saw this, we had a quick scout around but couldn't find any sign of Dracula, perhaps it was the wrong time of day. If you click on the photo and blow it up, notice how weather beaten the gravestones are.


This shop doesn't sell cakes, everything you see is actually soap. Tina wanted to have a look inside, but we didn't feel we could trust Harry, so Tina went in with Katie and me and Harry decided to climb the 99 steps up to Whitby Abbey.

Unexpected angst

Yesterday, one of my favorite Washington Post columnists posted a link to an amazing article written by a woman whose father had killed himself. The article was written in 1996, 20 years after her father's suicide.

Of course, reading it brought to mind all my widowed friends whose spouses killed themselves. I wanted to send the link to every one of them. But why? What possible purpose could doing so serve? What could they possibly gain from the article?

More important, what was my motive in sending it? Did I think it would "help" them in some way? Did sending it show how sincere and compassionate I am? Did sending it prove that I "get it"? I agonized.

My SOS readers know that I didn't send the link to everyone. I did send it to one person, and my angst grew as I wrote to her. Good grief: Her husband shot himself in front of her. How could reading this article not rouse visceral reactions, images she would rather forget and never will? I wound up writing her the most convoluted, tortuous note I've ever written, telling her to read it or not and asking her to forgive me if sending her the link was the wrong thing to do.


She responded very quietly, making no reference to her own responses to the article: Thanks for sending the article. It is a good one, in my opinion. You might want to consider posting the link on the board. She didn't hate me; she wasn't angry; she approved of the article; she suggested sharing it more broadly. But I'm still anxiety-ridden.


Let's see ... where was I?

... Ahhhh, yes. I was regaling you with tales of my adventures in the great Southwest.

I'd mentioned that I was going to have a rendezvous with my MIL from hell. Everything was fine. Isn't she a nice-looking lady?

(God, I'm evil. Really I am.) We met near Sedona and browsed a line of Navajo vendors. One woman asked where we were from.
Me: My boys and I are from Maryland; my mother-in-law and nephews are from Kansas.
Vendor: Oh, the boys aren't all yours?
MIL: No. These two [drawing them to her] are my grandsons. [heartbeat...heartbeat...heartbeat] Oh! I guess they all are.

Yeah. I guess they all are. I really hate that woman. But on the way home, HardPlace said that he was glad to spend time with his cousins, so I was glad I'd made the effort to get them together.

The last road trip we made before heading back to Maryland was to Santa Fe and nearby places. One of my favorite places in the world is Bandeleir National Monument. The boys were suitably impressed by the canyon, the cliff dwellings, the ladders.

We had a great time with perfect weather.

We also went up to Taos Pueblo. When I visited there as a child, it was dirty and depressing, but still important to see -- the oldest continuously inhabited community in the United States.

Now, they provide knowledgeable tour guides, who speak from the heart about the people and the place.

The town of Taos, on the other hand is unutterably tacky and awful -- but that didn't bother the boys.

That's enough for now ... I'll continue the travelogue next time.

A view of Whitby from Sandsend. I like the almost monochrome effect, which probably results from the photo being taken in the evening.

I like the atmosphere created by the sky on this picture. It was taken at Scaling Dam Reservoir in North Yorkshire.


Have mercy on us, O God, in your great mercy, hearken and have mercy.

We lit candles for you today. As we have so often these last three years. Three years.

Again and again let us pray for the repose of the soul of the departed servant of God the Deacon Nicholas, that to him may be remitted every transgression, both deliberate and indeliberate, and that the Lord God may establish his soul where the just repose.

First I lit one of the big vigil candles. I stood in front of the icon of St. Nicholas, and I offered you my love and my thanksgiving as I have from our beginning. Then Rock and HardPlace charged in and grabbed the sweet beeswax candles. We placed them in the sand at the feet of the icon of the crucifixion; three candles asking God to watch over you and hold you in tender mercy.

The mercy of God, the Kingdom of heaven, the remission of his sins we ask of you, O Christ, our immortal King and God.

I missed being in church this summer; I missed singing the praises of God; I missed seeing you in the Holy Place. "Seeing" you. "Hearing" you. Feeling you surround the boys and me as surely as if your body were still with us. Oh how I have missed you.

For You are the Resurrection and the Life and the Repose of your departed servant the Deacon Nicholas, O Christ our God, and we render glory to You and to your Eternal Father, and to your all-holy, good, and life-giving Spirit, now and ever and unto the ages of ages. Amen.

Three years. Miss Lisa made the blessed wheat for you again, as she always has and always will. I know how much you loved her and she, you. She places the candles in the wheat with such tenderness. Candles for the indwelling light, three candles for the Father, Son, and Holy Spirit.

O God of all spirits and of all flesh, who have destroyed death, overcome the devil, and given life to the world: Grant O Lord, to the soul of your servant the Deacon Nicholas, who has left this life, to rest in a place of light, in a place of happiness, in a place of peace, where there is no pain, no grief, no sighing.

HardPlace walked to the icon of the Theotokos with such dignity: You would be so proud of him. He's coming through the darkness; I'm finally seeing happiness on his face again. He lit the taper so carefully and brought it back for Rock and me to light ours as the altar servers came out for the memorial service. Each of us holding a candle, burning brightly with our love for you: Rock held his in a high salute, as a good deacon should. Candles. Three candles, one for each of us who loves you so.

And since You are a gracious God and Lover of Mankind, forgive him every sin he has committed by thought, word, or deed, for there is not a man who lives and does not sin. You alone are without sin, your righteousness is everlasting, and your word is true.

Our shared faith was the essence of our marriage; your faith guided every step of your life; and now my faith is bringing me through to a life without you. I still miss you; I still weep for you, as I did during the prayers today; I still love you, and I always will.

You are the Resurrection and the Life and the Repose of your departed servant the Deacon Nicholas, O Christ our God, and we render glory to You and to your Eternal Father, and to your all-holy, good, and life-giving Spirit, now and ever and unto the ages of ages. Amen.

The vigil candle I lit for you is burning tonight, giving soft light to the now-empty church. The boys and I put our tapers from the memorial service by the icon of the Theotokos: They will be re-lit tomorrow for the paraklesis. I brought home the tapers that were in the blessed wheat so they can light our evening meals until they have dwindled to stubs.

Three sets of three candles. Three years. Light everlasting. Memory eternal.

More of the same

1 bird and 2 views, I'm spoiling you now. The bird is of course a Herring Gull, which you may recall seeing a little while ago. The views are of Robin Hood's Bay and May Beck.

Somebody loves me

... and I love him.

I take a deep breath

The story's been told:
Fear, shock, horror. Tears, prayer, love.
Remembered -- and shared.

Blogging as usual will resume tomorrow (or the next day, or the next, or ...)

Another bird, another waterfall

A pair of young swallows, and Mallyan Spout, near Goathland.

Afterwards and afterwords

Good morning, HardPlace.
Morning, Mom.
Sweetheart, I have something terrible to tell you.
[long pause] Daddy died last night.
Oh yeah!? Well, if he's really dead, when is the funeral? Huh?
Wednesday or Thursday, probably Thursday.
[long pause] Well, who's going to be my next daddy?
Nobody, baby.
Why not?
Because daddies are very special people, and nobody will ever love you as much as your Daddy loved you and still loves you.

The days between Nick's death and funeral were surreal, at best. How could I be choosing a burial plot for my husband? And buying a double plot so that I could one day lie down with him again? Is Subdeacon David really shopping for a better casket price online? Why am I filing claims for Social Security? and Life Insurance?

The Wednesday afternoon viewing was pretty low-key, and I was actually able to talk with people who came to the funeral home. When I arrived at the funeral home, Fr. Joseph was waiting to walk to the casket with me. I was scared and sick to my stomach, until I looked down: Oh! Okay -- I can do this. He's not there. He really isn't there. I can do this. Okay. That's right, said Fr. Joseph, holding me while I regrouped.

In one of life's brutal ironies, my brother-in-law Pierre drove me to the evening viewing. My family had gone to the afternoon viewing, and there was no reason for them to be there in the evening as well. As we drove the short distance, I said to Pierre, You know, you really shouldn't be driving me tonight. Why not? You drove me to meet Nick at the church on our wedding day. You shouldn't be taking me to see him now. I know... I know.

I don't remember much of the evening, but one moment stands out: At the end of the Trisaghion prayers, Memory Eternal is sung three times in a key to break your heart. At the first strain, I turned to Cathy Baroody, wailed, and buried my head in her hair.

I have been told that the funeral was packed, but I never turned around to look. I know that the hall was crowded for the mercy meal after the service, and around 50 people came from Nick's office alone. Bishop Nicholas came to serve the Funeral Liturgy, and I think I will always remember the strength that I got from his hand when he grabbed it and held on to it as we followed the casket out of the church to the hearse.

Fr. Andrew gave a moving homily, which I may post here. He had presided and preached at our wedding; he baptized HardPlace and preached at the liturgy following; he had preached at Nick's ordination to the deaconate. He should not have had to preach at Nick's funeral.

Oh, how happy we were!

I'm not sure what else to say at this point. I am grateful to you who have read this sad chronicle along with me and let me know you were there with me.

Nick was the great love of my life, and his death was beyond devastating for me. The loss unspeakable, the pain unbearable, the grief unfathomable. Yet even knowing how the story ends, I would love him and marry him all over again. As we proclaimed at our wedding, love is strong as death (8:6), and I will love that man always and forever unto ages of ages.

Been a while

The bird is a young Dipper and the main reason why I got the new camera (to take pictures of birds). The sheep are for those of you who don't like birds. For those of you who don't like sheep or birds, come back tomorrow.

Sunday, August 8, 2004

The night kept in vigil with Nick was probably one of the most prayerful and painful of my life. Bob and Jeanne and I took turns sleeping on the floor of the waiting room and sitting with Nick.

I sang to him the favorite hymns of our church and the lullabies loved by the boys. I chanted psalms and I sang the Wachet Auf to him -- "Our Cantata," which we sang to each other during our courtship and which was the opening and closing music at our wedding. I prayed that God would be merciful to him, begged tender compassion for him. I wept tears of love and goodbye. And always, I sang to him.

And as I sang, I could watch the pressure in his brain subside. If I had to stop singing to drink or rest, the number on the machine would slowly, inexorably creep up toward the "danger zone." But when I sang to him, it went down to "normal." Somewhere, even though his brain had been destroyed by the monster within, he was there, hearing me call to him, feeling my love reaching through the darkness to him.

How I hated that monster! I have said elsewhere that I knew this was not "God's will" for Nick, that this is not what Nick was created for. I lay my hands on Nick, and I cried out to all the heavenly powers to help me. And I summoned all the courage and strength and faith I had, and I commanded that demon in Nick's brain to return straight the bowels of hell from whence it came. I tried, I really tried. And failed. And wept.

Deacon David came back from his wife's family reunion late Saturday night and came to the hospital right away, and again before going to church in the morning. When he came in the morning, as he walked in, I told him he had to help me sing, and I turned to the evlogetaria from orthros. It's one of our favorite parts of the liturgy, and I had been trying to sing it all night, and I simply couldn't find the right notes.

Sometime in the midmorning, the neurology team came to evaluate Nick before the organ donation. Unbelievably, they couldn't do the donation, because his heart was too strong. Yes, too strong. As I understand it, if the heart continues beating longer than an hour after the body is removed from the ventilator, the internal organs will start deteriorating and can't be used. Nick's heart was so strong that they couldn't guarantee that it would stop in time and that the organs would be viable. The bitter irony is that his heart was so strong, it would have been so terrific to give it to someone who needed it.

The doctors said that Nick could continue in the current condition for a number of weeks, because he was young and strong. We basically had three choices: We could remove the machinery, send him down to the operating room, and hope that his heart would stop in time; if it didn't they might be able to use his corneas, but not much else. We could wait 24 hours and see if there had been any change in his condition. Or we could simply remove the machinery and not worry about how long it took for his heart to stop beating.
That's it, I said. I can't do this to him, and I can't go through another night like this.
Alicia, you have to give him time,
said Jeanne. You were so adamant that he wanted to be a donor, you have to give him time.
Okay. We can wait 24 hours and see what tomorrow brings.

Mother and Jane and I had a conversation at this point that crystallized some things for me. My mother said that my singing wasn't merely bringing his brain pressure down -- it was keeping him here, because he didn't want to leave me. That if I wanted to let him go in peace, I needed to stop singing to him. And my sister pointed out that since the time he entered the coma, he'd not been left alone at all: The poor man hasn't gotten any peace. You and Bob and Jeanne have been with him nonstop, holding his hand, talking to him, singing to him. You know he would hate that, he's such a private man. He needs peace and quiet to rest.

I knew they were both right. And my heart started to let him go. I went to him and kissed him goodbye. I told him that he needed to go, and that I needed to go be with our children, that they needed me more than he did. And I left the hospital to go be with the boys. The Blacks had taken them to church, and we had agreed they would bring them right back to town and we'd all go to lunch. So while my husband lay in a death-like state a few miles away, I sat at a table with my children, my mother and sister, and my closest friends. And we laughed, and we enjoyed one another's company. Until or or another of us would start crying.

I spent as much time that afternoon with Nathaniel and Stephen as I could; then I headed for a nap. Jeanne called from the hospital to let me know that Fr. Charles and Fr. Joseph were there with communion and did I want them to wait for me. No; I'll be there in an hour or so, but they don't need to stay for me.

She called back 15-20 minutes later and said I needed to get there right away. I'll be there in 45 minutes. No, you need to come now. So somebody drove Mother and me to the hospital, while Jane took the boys home to Rockville so they could be in their own environment.

I walked into the ICU and Fr. Charles told me he was gone, that his heart had just stopped beating. I was stunned. But apparently, there'd been some mistake ... I'm really not sure what happened. Fr. Joseph said something about the end of life being as mysterious and uncertain as the beginning of life. Again, I was faced with the decision of what to do now.

And I agonized. I knew I had to let my beloved Nicholas die in peace. I wanted SOME good to come from his death, I wanted his organs to save someone's life. I couldn't go through this much longer. I had promised his mother 24 hours. I had to let him go. I wanted a miracle.

I paced the halls of the hospital for an hour, trying to work it through, and finally I saw things clearly. I returned the ICU and called for a meeting with the doctor, Nick's parents, his brother (who was representing the siblings), and my mother.
I've said from the beginning that I would not let Nick suffer. I really wanted to honor his desire to be an organ donor, but that is just not going to happen. I told you, Jeanne, that I would give him a chance. I gave him that chance, and he doesn't even want to wait 24 hours. I want him disconnected from the machines, I want the drugs that are keeping the brain pressure down stopped. I want to let him go in peace. And I want it done now.

And so it was. It took a while for everybody who had gathered to say their last goodbye, and it took a while for me to sign the papers, and it took a while for the ICU team to get everything ready.

But in the end, Nick's mother sat by his side, holding his hand. His father stood by her, with his hands on her shoulders. Mother and I sat at the foot of his bed, her arms around me. The doctor and nurse worked with quiet dignity, telling us what they were doing one step at a time. When everything was off, it was clear that Nick was leaving quickly. His mother stroked his arm, saying, Thank you, Nick, thank you. I sat crying quietly on my mother's shoulder.

The nurse covered the monitor displays. The room was silent. The doctor's voice.
Time of death, 9:12 p.m.

And I sobbed into my mothers arms.

Saturday, August 7, 2004

Mother had arrived Friday night, and I was so glad to see her. This may sound selfish, but I wanted someone who was there for ME. Paola was acting as "my family" until she got there, but everyone else at the hospital was Nick's family. I needed Mother be there for ME. Saturday morning, she and I spent a little time with the boys at the Black’s house before going to the hospital. It was so important for them to have me around, and for me to be around them. They were pretty shaken and disoriented by everything that was going on, especially Rock. I think they went to the zoo again, but I really don’t remember.

When I arrived at the ICU, Nick's mother told me the doctor was waiting for me.
There are some decisions to be made.
There are NO decisions to be made! I will NOT allow that man to suffer.
Alicia, there are decisions to be made.
Nick still had no brain activity; they had to keep a steady stream of drugs to keep the brain pressure down, but it was clear that he was not going to regain consciousness. The doctor presented us with the option of donating Nick’s organs. Nick’s parents were strongly against it, but I was in favor of it, because I knew it was something he believed in. Nick’s siblings also supported the idea, as a way for some good to come from his death. Matthew really stepped forward and spoke with dignity and clarity, allowing me to make the decisions without fear of sibling reprisal.

To help settle the matter, I called Beata and asked her to go to our house and look at his drivers license — did it say he wanted to be an organ donor? Why do you want to know that? Beata, I just need to know. Why? Alicia, there has to be some mistake. The implication was too much for her. When I told his folks that his license said yes, they were accepting but upset. They kept pressing Fr. Joseph and Fr. Charles for the church’s teaching on it — When does life end? Is there some teaching against it? They felt that since the body isn’t quite dead, organ donation is depriving God of a chance to work a last-minute miracle. It was hard for them to consider that perhaps God was working a miracle for someone else.

Meanwhile, I had not spoken to Fr. Andrew (my spiritual advisor) since Monday afternoon. We had kept on missing each other’s phone calls. I’d left increasingly desperate messages for him at every number I had, but we never spoke to each other. Saturday morning, he called on my cell while I was in with Nick -- the phone was in the waiting room, and somebody answered it -- and said he would come down from Philadelphia that afternoon. I called and left a message asking him to come right away, not to wait.

After lunch, I returned to the Black’s house to get HardPlace. Since it was clear that Nick was going to die, HardPlace needed the chance to see his Dad and say goodbye. All week long, I kept asking anyone who would listen, “What about the boys? How do I tell the boys? What do I say to the boys?” One resource that someone gave me said that they would have to revisit this period over and over again as they grow older and have more emotional resources for grieving. So I knew I needed to give HardPlace the memory of saying goodbye to Nick, that that would be important for him in the future.

As we walked into the hospital, I explained to him that it would look like Dad was asleep, but he wasn’t really. And I told him that the thing in his brain was going to kill Daddy, that Daddy wasn’t dead yet, but the thing was stronger than Dad and Dad was going to die. I was so glad to see Fr. Andrew sitting next to Nick when I walked into the ICU. (HardPlace waited outside while the staff got Nick ready for him — they hid as much of the tubing as possible with blankets and turned off some of the beeping monitors). I don’t remember much of the conversation, much of what any of us said. I just know that I don’t know how I would have handled things without Fr. Andrew.

Hanging from a pole over Nick's bed was an icon of Christ the Teacher, which HardPlace had received for perfect attendance at Sunday School. HardPlace asked why it was there. Fr. Andrew said, When we are children, and first open our eyes, we discover God in our mother and father, and when we come to the end ... we are hoping that if and when your Dad opens his eyes, he will see the Healer. He talked with HardPlace a little more, then led us in prayer. I told HardPlace to say goodbye to Daddy and to tell him he loved him. Goodbye, Dad... I love you... I miss you.

I gave HardPlace the choice of staying at the hospital to spend a little time with the family who were gathered or of going back to the Blacks’ house. He wanted to leave, so someone — I have no idea who — took him back to the Blacks’.

Afterwards, Fr. Andrew talked with Bob and Jeanne about Nick's desire to be an organ donor. Bob suggested that Nick had simply signed the drivers license form without thinking about it. Fr. Andrew said something along the lines of, I've known Nick for 13 years; I've been his spiritual advisor for 5. I have never known him to do ANYTHING without thinking about it, and if someone simply shoved a piece of paper in front of him and told him to sign it, what do you think he would do? Bob had to acknowledge that that person would not have gotten very far. I told the transplant representative that I wanted to proceed with organ donation. Nick's parents asked that I wait until the next day, just to see if there were any change, which I readily agreed to do.

Meanwhile, my sister, Jane, and Nick's younger sister, Johanna, had arrived. The ICU waiting room was essentially a crying room, with various people in tears at different times. One of Nick's closest friends from Clark University happened to be in town visiting his family, so he and his wife also came to see Nick. When I saw them in the waiting room, I asked if they'd been into the ICU yet. With her red eyes and tear-streaked face, Ellen just looked at me and said, Can't you tell?

Eventually, I sent Mother and Jane to the Blacks' house to be with HardPlace and Rock. Nick's siblings stayed quite late at the ICU, and Bob and Jeanne and I settled in for a last night of keeping vigil at Nick's side.

Friday, August 6, 2004

The email Paola sent to my friends Friday morning:
Here's the latest.

Yesterday afternoon the pressure in Nick's brain came down to normal levels (the best scenario the doctor had outlined), so starting at midday today they will stop the "coma-inducing" level of drugs. They will then be able to do tests of neurological function, etc.

Pray that Nick regains consciousness without any neurological damage.

Alicia was able to get a night's sleep in a bed and spend some time with the boys this morning.

Her mother flies in late tonight and her sister tomorrow afternoon.

Nick's parents spent the night on the hard chairs outside the ICU. His mother noticed this morning that today is the Feast of the Holy Transfiguration, in which Christ reveals his deity to his followers and for which their parish is named.

I spent some time with the boys in the morning; they were so glad to see me. Then they went to the zoo with Mr. Black and Oliver (or was it David?). It was such a relief for me to have them close at hand, to know that they were being taken care of by our friends.

The news from the doctors was grim. The pressure in Nick's brain had come down and stabilized, so they took him off the coma-inducing drugs. But he didn’t regain consciousness, and there was no brain activity. All we could do was wait and see what would happen.

Visitors started streaming in on Friday. Fr. Joseph and Fr. Charles had been there every day, as had Deacon David Baroody. Reader Romanos came, with Subdeacon Joseph and Seminarian Mark Miller; Lisa Dean and Gregory Dale both came as well, and were shocked and teary when I told them there was very little hope. Nick’s local family also started coming to see him: a steady stream of aunts and cousins. Nick's sister Suzy came in from Dallas on Thursday night; Matthew brought her directly from the airport to the hospital.

There was nothing anybody could do but wait and watch and pray.

Fr. Charles said one of the most important things anyone said to me that week:
This is not what God created him for, Abouna.
No, it's not.
It's so wrong. He's such a good man.
No. He's a great man.
Hearing those words from him meant more to me than I will ever be able to express.

Thursday, August 5, 2004

Nick was alive; I couldn't believe he had made it through the night, but he was alive. The day was really a blur. Shock, horror, fear, lack of sleep. What will I tell the boys?

Paola, my best friend from college, came to the hospital midmorning. She had emailed me earlier in the week to let me know she was in town on business. As it turned out, she wrapped things up earlier than expected and was able to be with me at the hospital all day Thursday and Friday: I was so glad for her presence.

I don’t remember too much of the next few days. Countless hours with Nick, singing to him and stroking his arm and face, kissing him tenderly and telling him how much I love him, how much the boys and I still need him. The doctors worked to bring the brain pressure down; they gave him lots of different drugs and put him in a cooling blanket to lower his body temperature. They wanted to slow the brain functioning enough to keep the tumor from being active. Was it working? What would I tell the boys?-

Sometime in the midafternoon, I went to Christy’s to take a shower and crash for a while. As soon as I lay down, a bulldozer started digging a swimming pool next door, right outside her bedroom window. It was pretty ridiculous, but I must have slept a little. I made sure that people woke me up so I would be in time to pick the boys up from daycare. Paola drove our car, because I really wasn’t capable at that point.

We stopped by the house first, so I could gather things for the boys. I needed to move them into the District, so that they wouldn’t be so far away from me. I couldn’t take having my heart torn in two: I needed to be with my husband, but my children needed me to be with them.

Thank God for Paola! She helped me focus on things the boys needed; I wandered from room to room, not really sure what to do. Does Rock need diapers? Does HardPlace have a favorite toy? Do you want a change of clothes? Clean underwear? I didn't know how long we would be staying with the Blacks in DC, and I didn't want food to spoil in the refrigerator. I remember holding up some zucchini and asking Paola if she thought they would keep. I don't recall what she said, but she somehow got me out the front door and back into the car.

We picked the boys up and took them to the Blacks’ house. I told them that I needed to spend time at the hospital with Daddy, and that I didn’t want to be so far away from them so we would stay with the Blacks for a while. I told HardPlace that Daddy wasn’t doing very well, that the thing in his brain was very strong and was trying to kill him but that the doctors were doing everything they could to help Daddy.

After I got them settled in; I had a quick bite to eat and a glass of wine and went back to the hospital to continue keeping vigil.

The email Paola sent to my friends Thursday morning:
Alicia asked me to write to you all.

Nick had the biopsy yesterday and things did not go well. The tumor reacted and released a lot of fluid, a rare event. It put pressure on his brain causing seizures. They have put him in a "coma" to slow brain damage and activity as they try to relieve the pressure. They can use this sort of method for 5 days and then they will need to pull him out of it no matter what. The tumor is fast growing and is less than 2 months old.

Alicia says Nick is "fighting for his life." The doctor whose briefing I heard used the word "grim" when he talked about the type of cancer he likely has. He used the word multifocal glioblastoma. It will be comfirmed by the pathology report. I asked what the best possible outcome in the next few days could be -- he said that the pressure would come down and they could bring him out of the drug-induced coma, so pray for this. Pray that there's no brain damage.

She is surrounded by her in-laws, Nick's cousin, and Rock's godparents. There were a number of clergy friends around last evening and her church has sprung into action. The boys are well cared-for by friends. I (a college friend living in Pittsburgh) just happened to be here and will take her later this afternoon to get the boys and bring them to a friend's house near Washington Hospital Center, where Nick is.

Alicia's main concern right now is to get sleep (she's had none in two days) and how to tell the boys.

I will write again as I am able.


Wednesday, August 4, 2004

Julie came by the house about 8:30; she took the boys in her car and followed me to the hospital. I told HardPlace that Daddy wanted to see him before his surgery. The doctors found something inside Daddy’s head that doesn’t belong there, but they aren’t quite sure what it is. They’re going to drill a tiny hole in his skull and stick a needle into his brain to bring a little piece of it out. Rock was scared of the hospital room and didn’t want to get too close to Dad; HardPlace was intimidated by everything, but asked a few questions about the equipment.

After a few minutes, Julie took Rock to the courtyard, and HardPlace climbed onto the bed so Dad could read The Hobbit to him; doing that was so important to Nick! After a while though, Nick’s head started hurting him again, so it was time for the boys to leave. Rock did allow Nick to kiss him and hug him, and I think HardPlace both got and gave a good hug. Julie then took the boys to child care for the day. I will be forever grateful to Julie for helping me get the boys to Nick. I don’t think I’d have ever forgiven myself if he had not had that time with them.

I had arranged for Przemek to pick the boys up, because I knew that I wouldn’t be home in time. So I made sure they knew that he would pick them up and that they would go out to dinner with Przemek and Beata, but that I would be home as soon as I could.

Subdeacon David and Linda came by around 10:00 a.m. Nick was so glad to see them. (He had particularly asked Linda to come by. David is nice and all, but a visit from Linda would be so lovely.) Then Matthew and Cornelia arrived with Bob and Jeanne (Nick's parents). Nick was in the bathroom when they arrived, so he was actually standing and able to greet everyone with hugs. I watched him hug everyone and then said that I wanted one, too -- we hadn't hugged since before he went to church on Sunday morning. That was the last hug I ever had from him, and it was a good one. I could hardly bear to let go.

The Blacks left after a short while, allowing Nick to be with his folks. Matthew and Cornelia went off somewhere (I can’t remember where). I had a message to call Nick's sister Suzy, so I went to the courtyard, and we had a nice conversation. She acknowledged that she and Nick weren’t very close, but she said she would do anything we needed and would come up from Texas today if we wanted. She also had some cancer contacts for us when it came time for treatment.

As they were taking Nick down for surgery, the orderly said we needed to remove his wedding ring in case his hands swelled. Jeanne offered me her necklace to put it on, but I just slipped on my finger, right next to my wedding ring. I had forgotten until that very moment that our rings were the same size. I still wear both our rings on my left hand.

Bob and Jeanne and I went downstairs to the surgical prep and waiting room. We waited while they prepped him, then we went in to wait with him before they took him away. He kept talking about the boys, making sure they were okay. Give them a kiss for me. Finally Dr. Levine came in. He talked with Nick and asked him how he was doing. Maybe it was just his pre-op drugs kicking in, but I remember being distressed at the deterioration in Nick just in the last few days. Nick seemed blurry and unable to answer questions well.
Do you know who I am?
My doctor.
Do you know my name?
... No, I'm sorry.
Do you know your name?
... Nick

Levine was quite upbeat about the biopsy; he’d done hundreds of these procedures and had never had any complications, everything would be pretty straightforward. The whole thing would take a few hours. Again, Nick’s last words to us were about the boys, Where are they? Are they okay? Kiss them for me.

So we went to wait. I went to a corner of the waiting room to sleep for awhile, because I hadn’t been sleeping well; Bob and Jeanne went to the cafeteria to eat something, because they’d not eaten much that morning after traveling the previous day. I rested, but couldn’t really sleep or even doze; after a while, I joined Bob and Jeanne in the cafeteria and made myself eat a little something. Then we went back to the waiting room, where Christy joined us. After a while, a nurse (or someone) came and told us that they’d gotten a late start, so we shouldn’t worry if the doctor didn’t show up when he’d said he would.

I was really working the beads that I’d brought to the hospital. The very first day Nick was in the hospital, I had grabbed the small prayer rope that HardPlace had made in Sunday School. I prayed and prayed and prayed. Bob made some comment about the beads — I don’t remember what — and I started to say that I really liked them because they were stretchy. As I was speaking, the elastic broke and little black beads scattered across the floor. Jeanne started to say, Gee, I wonder what that means, and I most emphatically said, It doesn’t mean anything! It means that I’ve been stretching the beads too hard and the elastic finally gave out. The four of us picked up all the little black beads, and when we looked up, Dr. Levine was walking across the waiting room to us.

He said that everything went fine, except there was a little drop of blood in the biopsy sample, which doesn’t usually happen. They were going to take Nick for an MRI to find out if it was just isolated blood, or if there was a clot in the middle of the brain. A clot would be really bad news, because surgery to remove or reduce it would be very risky. So we had to sit and wait again. Our anxiety level just grew and grew.

At one point I asked Bob to walk with me, and I asked him about the function of the part of the brain that might have the clot. If it were damaged during surgery, would Nick still be Nick? Bob said, yes, that this part of the brain controlled sensory input, but not personality and cognitive functions. If there was a clot and if there was damage during surgery, Nick would have some impaired motor control, a hard time with spatial recognition, and possible loss of some of his senses. It was too hard to contemplate, so we just went back to wait. And I rebuilt the prayer beads “stronger than ever before.”

Dr. Levine finally came back in. He said that there was no blood clot. Thank God! I said and breathed a huge sigh of relief. No, wait, he said. Then he told us that Nick had gone into seizures on the way up for the MRI. The seizures were due to tremendous pressure in the brain, caused by the tumor's generating fluid as a reaction against the biopsy — it’s called “wounded glioma.” They had induced a coma to reduce the brain’s activity with the hope that the brain pressure would go down, but It’s very likely that he will not survive.
A side note: Levine said he had read about wounded gliomas, but he had never seen it happen. Months later, when I finally got the stomach to search Medline and PubMed for "wounded glioma," I found exactly one article about it, describing two cases. That's how rarely it occurs. I also learned that the "fluid" generated by the tumor is blood. The tumor was hemorrhaging, so basically it was as though Nick had had a massive stroke.

We made our way up to the ICU, where we waited until we could go see him. I called Beata and Przemek right away. After making sure that the boys were not in the room with her, I told Beata, Nick might die — tonight! She said she and Przemek would spend the night at our house and get the boys to child care in the morning. So I just outlined what they needed for the next day; I told her to tell the boys that I had to stay at the hospital with Daddy, but that I promised to pick them up at the end of the day on Thursday.

Then I called my mother and sister. At first I told Mother to just wait and see; then I called her back and said I needed her to come as soon as possible. She was 3 hours from her home and first had to drive home before she could book a flight out of San Francisco, another 3 hours from her house. She arrived Friday. Someone called the church; it must have been me — I think I left messages on every phone I could think of. Since it was the Dormition fast, there were services at the church, and I wanted to make sure that Deacon David Baroody knew what was happening before he left town for his wife's family reunion.

Bob and Jeanne and I camped out in the ICU; we took turns crashing on chairs in the small waiting room and sitting with Nick, praying for a miracle. I talked to him, held his hand, sang to him, prayed with him, told him how much I loved him, how much I needed him, how much the boys needed him. I begged Nick to hear me, not to leave me, but I really expected him to die that night.

Tuesday, August 3, 2004

The doctors found something in Daddy's brain, and that's what's giving him the headaches.
What is it?
They aren't exactly sure. Tomorrow, they're going to do a kind of surgery called a biopsy, to take a little bit of it out so they can see what it is.
How did it get there?
Nobody knows.
I think it crawled in his ear.
Maybe, sweetie, maybe.

I took the boys to daycare in the morning (Rock was in the toddler class 2 days a week; HardPlace was in summer camp those same 2 days); I told Miss Cheryl what the diagnosis was, and I mouthed it to Miss Susan, who just started crying. Then I went down to the hospital.

Nick said he wanted the boys to visit him before his biopsy. I wasn’t sure that was a good idea, because I was afraid it would be too traumatic. Hospitals are scary places, and Nick had a roommate who was moaning and writhing in pain. There will be plenty of time for trauma, I said. But Nick was insistent; he wanted to read HardPlace some more of The Hobbit. His cousin Christy told me that I really needed to do this for Nick, that when she had her cancer surgery, she would have strangled anybody who kept her boys from seeing her beforehand. So I started making arrangements with Julie (one of Nick's colleagues) to bring the boys downtown on Wednesday morning.

Nick had more tests on Tuesday: lots of blood work, a bone scan to see if the cancer was anywhere else, another MRI. The cancer was nowhere else in his body: That's a good thing, right? The doctor hemmed and hawed a bit: Well, it depends... I didn't know then what I know now about primary brain tumors versus secondary tumors, etc., etc. The anesthesiologist came by to talk with Nick about the biopsy; we were particularly concerned about the hypokalemic periodic paralysis. Christy had had a bad experience with the anesthesia because of it, so we were really cautious and worried. It was a relatively low-key day, and I left in time to pick up the boys from child care.

Matthew and Cornelia (Nick's brother and his wife) went to the hospital that evening, and Christy brought in dinner on linens. They had a good visit with him, cheerful and upbeat. I started hearing stories about people who were walking around 12–15 years after being diagnosed with brain tumors. I was really clinging to that hope; I had to believe that Nick would survive, because how could the boys’ adoptions make sense if their dad was taken away from them? Two women had made the hardest decision of their lives to give their babies a loving family, a father, a DADDY... what kind of twisted irony would have them lose that Daddy so early in their lives? Nick had to recover.

Monday, August 2, 2004

The email I sent to our friends Monday morning:
Dear friends,

If ever I needed the prayers of the faithful, it is now (and I have faithful of many different persuasions on this list).

Nick is in the hospital. He'd been having dizzy spells and headaches; he blacked out momentarily at church last Sunday and again yesterday morning. So I took him to the ER. The CT scan shows a brain tumor. They haven't done all the tests needed to say what kind, how big, what treatment, what prognosis (he'll be in the hospital several more days while they gather all that information). But it's big and it's right in the middle of his brain.

There's nothing else to tell you right now. Just keep us all in your prayers.


After checking with the nurses to see how Nick’s night had gone, I took the boys to Fr. Ephrem and Khouriya Judy's home. Tono and HardPlace play together very well, and I knew that Judy would be able to handle Rock, especially with Cyril’s help. With all the shuttling around and the awful traffic into the city, it was 11:00 a.m. before I got to the hospital. I’d missed visits from Fr. Joseph and Fr. Charles and from the neurosurgeon, Dr. Levine. The initial blood tests showed that the cancer was malignant. Dr. Levine had told Nick that IF they did a biopsy it would be on Friday.

When they took Nick down for more tests (MRI, etc.), I called Cousin Christy. Matthew had reminded us that she had experience with cancer and contacts in high-up places. Nick had actually left her a message earlier in the morning, so she was already on alert when I called. She came straight to the hospital and spent as much time there over the next several days as she could.

She had terrific energy and was so encouraging, and she brought good food. It was impossible not to feel hopeful after talking with her and being around her. She had a game plan of whom to call, questions to ask, where to go for second opinions, where to go for treatment, everything all lined up as neatly as could be. I hung around the hospital as long as I could before needing to go pick up the boys, because Dr. Levine was supposed to come by again in the afternoon.

Levine didn’t show up until after Christy and I had left. He told Nick that they would do the biopsy on Wednesday and send him home on Thursday or Friday. I let Nick’s parents know the schedule, and they booked a flight to arrive late the next day (Tuesday).

The email I sent to our friends Monday night:
Not the news we were hoping for.

The blood tests show that it is a malignant cancer. They will do a needle biopsy of the brain mass on Wednesday to confirm that. Then Nick will have 3-6 months of chemo. The doctor said this type should respond well to the chemo.

That's all I know right now.

Thank you for your prayers.

"The doctor said this type should respond well to the chemo." That is what Nick told me when we spoke on the phone Monday night. Given that the doctors were already reasonably certain that the tumor was a glioblastoma, I cannot believe that they said that. What I do not know, and will never know, is whether that is what Nick heard them say or if he was lying to protect me. Does it matter? Not really.

Personally, given what I have learned since his death, I believe that Nick chose to protect me. He would not have wanted me to despair. I think he may also have been protecting himself: He would not have wanted to see me suffering in despair. Do I wish he had told me? Yes. Does it matter? Not really.

Sunday, August 1, 2004

Nick got a ride to church with Fr. Ephrem, because the blue car had been totaled, and Nick needed to be there early for sacristan duties. I was getting the boys ready for church, when Deacon David (Baroody) called. He said that Nick had “had another episode” and that I needed to come to church to take him home.

I immediately called Beata and Przemek, making arrangements to take HardPlace and Rock to their house. I wanted to take Nick directly to the hospital, and I knew it would be easier for me to do that if the boys weren’t with me.
HardPlace, you and Rock are going to Auntie Beata and Uncle Przemek's house, so I can take Daddy to the hospital.
You know those headaches Daddy has been having?
I want the doctors to find out what is causing them.

On the way down to church, I called Linda Black, begging her prayers. She was in New York City for the weekend, but I needed to tell her what was happening. When I got to church, Deacon David and Fr. Joseph both urged me to take Nick to the hospital. I told them that was my plan; Fr. Joseph helped me get Nick to the car, and as he turned to go back to the church, I asked him for a blessing. Nick, of course, tried to talk me out of going to the hospital: "Let me just go home and sleep it off." But I was determined. We tried to contact our new doctor to find out if he had a hospital preference, but we couldn’t reach him. I went straight to Shady Grove Hospital, 5 minutes from our home.

After several hours in the ER, with Nick in a lot of pain most of the time, the doctor came back into the ER unit.
Is that the only chair? looking at my stuff on the single chair by Nick's bed.
Oh! Let me get you another one, looking around for one to magically appear.
No, it's for you. You should sit down.
Oh, okay.
Your husband has a brain tumor. I don’t know what kind it is, but it’s big and it's right in the middle of his brain. [long pause] I’m sorry.

He showed me the film and pointed to a dark area right in the middle. It actually looks like there might be two separate masses. I stumbled with my words, trying to ask, but not wanting to, what the prognosis was. What does... How lo... I guess you don't know anything right now, do you? Not until we know what kind of tumor it is. Nick was awake at the time, and he’d had a lot of drugs by then, but he said that he understood what the doctor was saying.

I went outside and called Nick's parents. I made Jeanne get Bob on the phone as well. It was so hard to get the words out. And I can only begin to imagine how hard it was for them to hear; all they could say was "Thank you for telling us." I asked them to call Nick's siblings, but to hold off on telling the aunts and cousins until we knew more. I dreaded the deluge of phone calls asking questions I couldn't answer. While the ER doctor was arranging for Nick to be transferred to the Washington Hospital Center, I went home and changed clothes. I made a few quick phone calls -- Fr. Joseph, my mother, Nick's boss -- and I arranged for Przemek and Beata to bring the boys home so they could sleep in their own beds. In retrospect, that was one of the funniest phone calls, funny for how utterly inane it was.
Beata, are the boys right there?
Good. I don't want them to hear your reaction to this... Nick has a brain tumor.
Oh no!
I need you to keep the boys longer, while they transfer Nick to a different hospital.
When will you be back?
I don't know.
Well, we wanted to go to the 6 p.m. mass, because we didn't go this morning. Will you be back by then?
I don't know.
But we didn't go this morning. We really need to go this evening. Can we take them with us?
Of course! Here's what I need you to do: Take them to church, feed them dinner, and then take them back to our house so they can sleep in their own beds. Can you do that?
Yes, I can do that. But it will be okay to take them to our church?

It was so much easier to talk about the merits of taking the boys to a Roman Catholic church instead of an Eastern Catholic one than it was to try to wrap our brains around what was REALLY going on.

When I got back to the ER, Fr. Ephrem was there. I was so glad to see him, I started crying right away. How is Deacon Nicholas? They didn't tell you? No. He has a brain tumor. Fr. Ephrem staggered and had to grab the table, and tears rolled down his face. He gave both Nick and me communion, for which I was deeply grateful. He took me to the cafeteria for some food and stayed with me until the arrangements to transfer Nick were made.

When I found Nick at the ER at the Washington Hospital Center, he was in less pain and more alert. They must have seen something that concerned them, he said. He couldn’t remember what the doctor at Shady Grove had told him. So I had to tell him that he had a brain tumor. Oh, no. A brain tumor? That’s terrible. Indeed. After they moved him from the nurses' station to a bay in the ER, I went outside to wait for Deacon David. I seem to recall a few phone calls back and forth about whether or not he should make the long drive into DC. There really wasn't anything he could do, but when he came up the sidewalk, I just crumpled into his hug and started sobbing. He waited with me until we were told that they had a room available for Nick. But it was a long time, nearly midnight, before he was actually moved upstairs to the intermediate care unit. I stayed with him until he was settled in.

I got in the car and called my sister; she talked me home safely, sending me all her love and strength and courage, as she did every time I left the hospital in the following days. I'm sure that I was utterly incoherent, and I don't remember anything of that first conversation. I just needed to talk to Jane and to get home to my boys.