Catching our breath

We are at home and finding our way.  Our hospice nurse is wise and gentle and brings great relief and peace to the whole family.  She and Steve have a good rapport - she has been a  nurse for 30+ years and possesses that rare, kind quality that turns nursing into an art as well as a science.  She makes three house calls a week, but hospice means we are free to call and have someone come whenever we feel like it is necessary.  We are grateful.


Steve's main presenting problem since our homecoming last Friday has been shortness of breath with an ensuing anxiety.


Frank left yesterday morning to return to Gulf Shores after being here a couple of days....I asked him to write a detailed description of Steve's Tuesday Excursion to St. Vincents....  

"I don't know the medical reasons for the shortness of breath, but his lungs are getting a workout.  He has a catheter in his right lung which allows it to be drained at home when he feels that too much fluid has accumulated where it does not belong.  It is a painful procedure, but seems to be a relief.  The lung struggles to reinflate and I imagine after draining it loses some strength.

The left lung is another story.  It began accumulating fluid later in the game and this was discovered via scan when he was in the hospital.  It has now been drained, I think, 3 times, via a medical procedure done behind closed doors at the hospital (which is the segue to this story).

On Tuesday morning, Steve knew it was time to drain the left lung so Melanie arranged the appointment with several calls and some vip treatment from good friend and doctor, Shane Wear.

So this is what it takes...the ambulance arrives about 1pm.  Steve moves from his chair to the wheel chair.  This move was exhausting.   An oxygen discussion ensues with the paramedics who note that his oxygen machine only goes to 5 (whatever that means).  They mention that they have a portable that goes to 15 and bring it up with a mask to replace the nose thing.  After putting this on Steve and cranking the air up, relief!  Within 3 minutes he is ready for the trip (carried down the stairs while sitting in the wheel chair, then put on a stretcher for the ambulance ride).

Steve had about 1.5 liters drained from the left lung, and got to rest at St. Vincents on an infusion of good oxygen.  When the ambulance arrived to take him home a few hours later, he was taken off the higher oxygen setting and loaded back up, carried back up the stairs, and put in the bed.

He seemed much more relaxed, and a new oxygen machine that can crank it up to 10 was delivered by hospice care.  That was it for the day.

I went to see him Wednesday morning and he was sleeping soundly.  Melanie said that he had "the best night ever!"  Relative to a week of gasping for air, I imagine it probably felt like that, and hopefully it will last.

Maybe the lungs needed the draining to get back working better, but it was very apparent that the hits of more oxygen brought him comfort.

Hopefully today he can speak more.  Steve has always been a listener, but it will be nice to hear his infrequent ramblings again."

silence

Steve and I are participating in this online retreat about benedictine ideas.  Yesterday our assignment was about the value of silence and we had some fill in the blank type phrases.  I asked Steve to tell me his answers out loud and I copied them to post them here.

We receive many moving letters about how Steve's few but kind, generous words and quiet but true ways have formed and shaped their lives.  I love gathering the children on the 'family bed' to hear some of them or parts of them.    I think these kinds of letters, his journal entries and written conversations like this one will be nourishment for us for all of our days.

Here's the conversation:


The assignment did the bold line and Steve's answers are on every other line.

Silence is . . .

well, it's sacred space, letting an idea go to its end.  that make sense?

Silence brings . . .

I don't know about that.  I'll have to think about it.


Silence enables . . .

all the other voices to recede into the background.

Silence keeps me . . .

unhurried.

Silence helps me . . . 

come to whatever i want to say.

Silence hurts me . . . 

when i use it as a self defence

In silence, I listen . . . 




In silence, I hear . . .

Instead of answering these last two Steve made up a poem,
" In silence I listen, in silence I hear,
   without it I panic and give in to fear."

sorrow and love

This week has felt chock full of both of these things.

We are finally home from the hospital after an 8 day stay.  Although there was initial talk about trying some procedures to help Steve benefit from his food, the drs. finally concluded that his breathing and lung issues made any type of surgery too precarious.  We have come home and do not anticipate anymore chemo or procedures unless Steve gets stronger in a miraculous way.

Steve's parents and our children are all around this weekend so we will send more details along the way next week - we continue to take one day at a time and are so grateful for the constant care and provisions of our friends.

Daily Bread

Because the meds make it hard for Steve to do any attentive reading, I have been reading aloud to him.  This is one of the surprising gifts of this cancer desert because there are few things I enjoy more than reading aloud.  My early work was as a storyteller and librarian and although I wasn't very good at enforcing fines it never felt like work to read to children.

As a young mother I remember some parenting guru advising my friends and me to put 10 books on the mantel each morning and then read to our children throughout the day from this pile.  Then, at the end of what was usually an exhausting day, we could rest in peace knowing that the minds and spirits of our children had been nourished.

I am finding snippets of  that same kind of peace on the days that Steve and I have time to read aloud together.  Reading in this unhurried, contemplative way each day is a vanguard practice for us.  It keeps us in the receiving posture by putting ourselves in the 'way of the gift'  (a phrase from Gilead by Marilynne Robinson).

It promises that at some point some word or phrase will strike us particularly and as a matter of course feed our hope.  The Jesuit poet Gerard Manley Hopkins called these particularizing phrases 'biddings.'  Julian of Norwich, the mystic who wrote our 'All shall be well' prayer called them 'showings.'  I usually know when I am having one because I feel something akin to a blush or a shiver or a quickening. 

This past week has held some of our most discouraging moments so far. Steve and I have had the big conversations about the bigger things facing us with this cancer.  But how to deal with the roller coaster like events of each day is the kicker for me.  Steve says that when he feels disoriented, if I start reading to him, in a matter of minutes he will remember who he is and what he loves.  It all comes back to him.

What is that, I wonder?  It is mysterious, but surely it is tied to the truth that we are spirits more than bodies and fed by ideas as significantly as daily bread.  When i grab a pile of books to take to the hospital with us or feel for one under the bed to read from with the nightlight wedge, it seems so random and unguided.  But this week, reading  George Macdonald's At the Back of the North Wind and Abraham Verghese's Cutting for Stone, Andrew Nugent's The Slow Release Miracle/ A Spirituality for a Lifetime and Maria Lichtman's Poetry as Prayer: The Life of Gerard Manley Hopkins, Steve and I have been fattened with ideas and somehow readied for another day.

Burley on Preachers

I don't mean for this little passage to be morbid at all, in fact I was struck by it long before I knew I was sick. It strikes me more as being about preachers (of which I was one) and people, and real community. I think our Priests at All Saints would understand what Burley is getting at, and they have demonstrated real love to us over and over, making our church a city of refuge for our family.

This comes from a 'A Place on Earth'. I remembered this section from the first time I read it, and read it aloud to Melanie a month or so ago. It's when Burley sees the preacher going up to Mat's house when they find out that Virgil is missing. And Burley recalls the preacher's visit when Tom died.

"Wednesday afternon, after the news had pretty well got around, I seen Brother Piston going in up there at Mat's. And I says to Jayber, "I know the speech he's going to make." And so would all of us. He come and said all that to me after we knew Tom was dead. And none of it quite fit. You could say that he didn't have too good of an idea who he was talking to. (As Jayber says, when we seen Brother Piston go in up at Mat's, the worst thing about preachers is they think they've got to say something whether anything can be said or not.) While he was having his say I sat there and thought my thoughts. Here in a way he'd come to say the last words over Tom. And what claim did he have to do it? He never done a day's work with us in his life, nor could have. He never did stand up in his ache and sweat and go down the row with us. He never tasted any of our sweat in the water jug. And I was thinking: Preacher, who are you to speak of Tom to me, who knew him, and knew the very smell of him?

And there he sat in your granddaddy's chair, with his consolations and his old speech. Just putting our names in the blanks. And I thought: Preacher, he's dead, he's not here, and you'll never know what it is that's gone.

The difference between people is what has got to be taken notice of. There's the preacher who has what I reckon you would call a knack for the Hereafter. He's not much mixed with this world. As far as he's concerned there is no difference, or not much, between Tom Coulter and Virgil Feltner. Their names fit into the riddle he thinks he knows the answer to. I wouldn't try to say he ain't right. I do say that some people's knack is for the Here. Anyhow, that's the talent I'm stuck with. For us it's important to keep in mind who Tom was. And for Mat and them I judge it's important to know who is meant when they speak of Virgil. We don't forget them after somebody who never knew them has said, "Dead in the service of his country" and "Rest in peace." That's not the way these accounts are kept. We don't rest in peace. The life of a good man who has died belongs to the people who cared about him, and ought to, and maybe itself is a as much comfort as ought to be asked or offered. And surely talk of a reunion in Heaven is thin comfort to people who need each other here as much as we do.

I ain't saying I don't believe there's a Heaven. I surely do hope there is. That surely would pay off a lot of mortgages. But I do say it ain't easy to believe. And even while I hope for it, I've got to admit I'd rather go to Port William."

update from Uncle Frank

Melanie, Steve and Uncle Frank's notes from the week:

This week has held some pretty rough moments. Over last weekend we noticed that Steve's vomiting had a different personality - more projectile. On Wednesday, Steve had a an Upper GI as well as a stomach Xray to see what was going on. We discovered that Steve's tumor is now pressing in on his duodenum and so he is getting very little nourishment from the small amount food he has been able to keep down. So, instead of Chemo, an admission to the hospital instead. Steve was admitted to the Oncology/Bone Marrow Transplant floor b/c there was no room on the Oncology Floor. (The rooms were pretty nice, and all the pudding you could eat.)

Steve's brother Frank had already been planning on coming so that he could keep an eye on Steve while Melanie tended to Brennan's Twelfth Birthday Celebrations. On Friday the Docs made an attempt to put a stent (endoscopically) through the duadunum, but found that it was too tough to get through the tissue.

We've been at UAB for the weekend, watching the Kentucky Derby and awaiting a game plan for Steve's nutritional needs. Frank kept notes as he was sending emails home to family so we have copied them here to give you a new perspective.....




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Couldn't get the procedure to work today, would cause more problems than good, so we are waiting for the surgical team to come see us to see when they will schedule the bypass/detour surgery. Could be today so no food now while we wait. He is sleeping and pretty out of it at the moment. May schedule tomorrow but doubtful on Saturday. I will let you know.

Regarding today's procedure, the location of the blockage would have caused complications with a stint inserted. He is fine drinking water and last night enjoyed chicken noodle soup. He said that he keeps forgetting how good chicken broth is and wanted to remember to ask for it more often.

Melanie left to get Brennan from school and prepare the party. This am Brennan and I hung a Dora the explorer pinata in the front yard tree. They will enjoy hitting it (don't tell nora). Melanie will come back this evening for a visit. I will stay in the room tonight and she will handle the sleepover.



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We met with the surgical team. No surgery tonight. They are consulting further. We are about to move rooms out of ICU to the 9th floor.

Steve is in and out of sleep...when he wakes, we have good conversation.

Not sure if he will be discharged tomorrow or stay in all weekend to find more info on Monday. Probably won't get any news tonight. The surgery guys were not offering much info.

Steve ate half bowl of chicken noodle and almost whole bowl of veggie soup, some coke so hunger is better. First food since yesterday 6pm.
Dr. Curry paid a nice visit and called the Head surgeon to see what's up. Head surgeon is coming in the morning to discuss surgery options. It is a relief knowing that Steve won't have to wait the weekend and start everyone over on Monday.

You could tell Steve was very relieved to know there is planning going on (even though you have to make noise to make sure you weren't forgotten).

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We had a fairly peaceful night other than the required interruptions for vitals and meds. At 6am a resident surgeon came in with 2 others and woke us up to talk about surgery stuff...same stuff he was saying at 5pm yesterday. Not much help ...kind of a wiener. Then his boss, Dr. Heslin came in and he was great and made a game plan.

1. Today, drain lung to help breathing (been increasingly short of breath, been there before).
2. Full ct scan TODAY, and results today
3. Study scan to determine next move

Plan a...if the scan says it may work, do a direct feeding into the intestines by some sort of iv which can offer 24/7 nourishment with any liquid (boost, ensure, or anythin.g better like that).

Plan b...a relief valve tubing that can drain the stomach when nausea ensues and nourish with whatever he can intake by mouth with drip iv supplement

The plan is to get breathing better and nourishment better to get back on the chemo wagon. May do the tube valve in stomach anyway because it may help with chemo nausea...a simple drain of the stomach, easy touch button drainage...kind of cool idea.

They are still studying the new CT scan and we'll have a sure plan tomorrow or Monday. So, for now...wait.

Monday, Monday

"He has brought us in safety to this new day...." How many times have I written, prayed, or posted that prayer over the last number of years? And yet sometimes it remains the most elusive thought. I suppose that when you are forced to slow down, you have to then face all that internal noise that was hidden before. I have been discovering for some time what a "hand wringer" I really am.

But that little prayer from the BCP has helped me so many times to remember who I am and where I come from. It also helps me see how much I have been given. This is the hardest work- remembering and then living in the peace of that; being able to be present to today and not just my worries.

Cancer wise, the main job is eating. I'm still having A LOT of nausea, but need to be putting some meat back on my bones. Also, just maintaining some good regimens with my medications, supplements, walking around the house, etc. My favorite place is bed, but I can't be staying there. We are scheduled for more chemo on Wednesday.

We were awakened yesterday at 5:00 am to the roar of several motorcycles outside the house. My friends are heading on a ride to Key West, and since I couldn't go, they decided to buzz the house so we could wave them off. Take it easy, boys!

Thank you for all those rich birthday wishes this weekend. I loved them.